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Nikki’s Stage 3 HER2+ Inflammatory Breast Cancer Story

Nikki’s Stage 3 HER2+ Inflammatory Breast Cancer Story

Interviewed by:

Alexis Moberger

Trouble breastfeeding her newborn son led Nikki’s doctor to investigate previous health concerns, where she discovered a stage 3 tumor in her lymph nodes and bowel. 

Years passed after overcoming bowel cancer and new symptoms arose that Nikki assumed were symptoms of menopause until she awoke one morning with an inverted nipple. This led to a secondary diagnosis of HER2+ inflammatory breast cancer.

Nikki shares her double cancer story shortly before undergoing single mastectomy surgery and reveals her side effects from chemo, how she advocates for herself as a patient, the effects cancer has had on her marriage, and how she explained her diagnosis to her 7-year-old.

Nikki shares her stage 3 HER2+ inflammatory breast cancer story
  • Name: Nikki M.
  • Diagnosis (DX):
  • Staging: 3
  • Symptoms:
    • Centralized pain around the nipple
    • Inverted nipple
    • Swollen breast
    • Differences in nipple color
    • Warm-feeling breast
  • Age at DX: 47
  • Treatment:
    • Chemotherapy
      • Red Devil for 3 rounds
      • Docetaxel for 4 rounds
      • Epirubicin and Cyclophosphamide
    • Surgery
      • Single mastectomy 
    • Radiotherapy
Nikki's cancer timeline

Try and find joy, as daft as it sounds, because it’s not going to harm you and it might help…When it comes to laughter and joy, I try to find a little bit every day.

Nikki M.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table Of Contents
  1. Symptoms & Diagnosis
  2. Quality of Life
  3. Chemotherapy & Side Effects
  4. Being A Patient Advocate
  5. Reflections

Symptoms & Diagnosis

Tell us about yourself

I’m Nikki and I’m a mum of 2. I’ve got a little boy who’s 7 and a daughter who’s in her 20s, so massive age gap. I’m also a teacher, which is a job that I love. My hobbies tend to revolve around the outdoors, so lots of walking and exploring the countryside. I live in Norfolk, which is beautiful. I also love to garden, cook, and read as well.

What led to your cancer diagnosis? 

In a way, this treasured son actually saved my life because if I hadn’t been trying to breastfeed him, the doctor wouldn’t have done the investigations.

The very beginning was 2016. I was breastfeeding my son and he was a son that I’d waited a decade for. We were told we couldn’t have children. When he arrived, he was a miracle baby. My daughter used to joke, it was like the coming of John the Baptist. He was a much-treasured, wanted baby and I wanted to do everything right.

Nikki was diagnosed with cancer after being seen by a doctor due to breastfeeding issues

I was trying to breastfeed him and he wasn’t putting on weight. I went to the doctor and asked her if I could have some help to increase my supply. She looked at my medical records and said to me, “I’m willing to help you, Nikki, but I’ve looked at your medical records and there are lots of bowel complaints, IBS, and stomach issues. Will you let me investigate further?” 

I’d been going to the doctor for years and was told I had IBS, to improve my diet and it would solve itself and it never had. That GP saved my life because she uncovered that I had a stage 3 tumor that was in my lymph nodes and my small bowel. It was a neuroendocrine tumor, which is incredibly rare. I think it’s 1 to 2% of cancers and it’s often mistaken for IBS. Although it’s very slow growing – my tumor was the laziest tumor in the world – they think that it had been there for years and we just ignored it or had been told it was something else. 

In a way, this treasured son actually saved my life because if I hadn’t been trying to breastfeed him, the doctor wouldn’t have done the investigations.

I look at that now and think it was a baby cancer because all I needed was keyhole surgery. 

How did you react to your cancer diagnosis?

It was scary, particularly in those first few weeks after you get your initial diagnosis where you don’t know how far the cancer has spread. It was scary and it was emotional, particularly because I was diagnosed on my son’s first birthday, which was heartbreaking. I was really angry at the world for a very long time in terms of what I’ve gone through.

Since it was a baby cancer, because of keyhole surgery, it was gone and I’ve been free of that cancer now since 2017 and I have yearly checks. 

Years later, new symptoms arose

You would think that would make me more likely to go to the doctor. But in August of 2022, I started to develop a pain in my right breast that went around mainly the nipple. You’re always told cancer doesn’t hurt so I ignored it. I feel really silly that I ignored it, particularly because in my family there was a lot of breast cancer. If you go back 2 generations, that’s how most of the women in my family sadly have passed away or they’ve had it, and it’s been a factor later in life.

What did you think was causing your symptoms? 
Nikki began experiencing pain around her nipple

I spent that summer holiday moaning about the fact that my boob hurt and my husband, probably to shut me up, Googled and said to me, “It’s just a menopause symptom.” That’s what I wrote it off as because I had it in my head, there’s no lump and there’s pain. That can’t be cancer. 

Nikki assumed her breast pain was caused by menopause

This pain continued through the holiday and got really sharp. Again, I thought maybe it was an ill-fitting bra. Your boobs do hurt when it’s coming up to your period or just after. I found lots of excuses to ignore it and I feel really silly. 

What made you see a doctor?

I woke up and my nipple was completely inverted and I had a panic.

Towards the end of November, that’s how long I left it, I woke up and my nipple was completely inverted and I had a panic. I was supposed to be doing something big at work and I emailed work this morning and said, “This has happened. I’m not coming to work. I’m going to the doctor.” 

I went to the doctor and she said the same as me, there’s no lump. She said, “All I can see is the nipple inversion and that could be a cyst or something. I really don’t think this is cancer, but I can see how worried you are so I’m going to do an urgent referral.” I went home and felt a little bit silly, but I was also convinced that it was cancer. 

Getting a secondary cancer diagnosis

Within 2 weeks into mid-December, I had a whole-day appointment at the hospital. The type of cancer I have is inflammatory breast cancer, so it does come with pain. It often comes without a lump. Usually, you also have lots of red rash on your boob and I didn’t have any of that. My only symptom to this day has been the inverted nipple and the pain. 

I had a mammogram, but that doesn’t pick up my sort of cancer which is why the risk is so high with my sort of cancer. I had to have a CT contrast scan and I had a biopsy as well. The doctor who did the biopsy said, “Do you want to know? I don’t like knowing things that you don’t know because it’s your body. It’s cancer.” 

We didn’t know it was inflammatory, although I think he did know because another symptom is that you get almost what looks like cellulite, that kind of texture on your boob. I’m a plus-size woman of 47. I have cellulite in other places on my body, so I didn’t think anything of it but he pointed that out to me. He said to me, “I can’t be 100% certain, but looking at what we’re taking out of the biopsy I want you to know that I think it’s cancer.” 

The doctor who did the biopsy said, “Do you want to know? I don’t like knowing things that you don’t know because it’s your body. It’s cancer.” 

Early scans showed that Nikki may have breast cancer
Experiencing guilt for not going to the doctor sooner

My whole world fell apart because I was scared, but also haunted by guilt. After your initial diagnosis, you have a few weeks where you don’t know how far it spread. I had read enough and thought that it was inflammatory breast cancer before anybody told me and I knew that it was super aggressive. I knew that most women who had it had cancer somewhere else. I knew that the survival rates were scary. You shouldn’t Google them, but of course, I had. 

The guilt that by ignoring something, I could possibly leave my children and husband without a mother and a wife. I was also thinking to myself, “How stupid are you that you’ve had cancer? You should be better at this. You should have followed it up.” 

I have been incredibly lucky in that it has not spread anywhere else. Whenever I’ve shared these feelings with the cancer team, they have said to me that my symptoms were so slight that I did really well to get it picked up because I was so insistent. But my whole world just fell apart that day.

Did you get yearly mammograms? 
In the UK, Nikki is considered too young to get a yearly mammogram

I’m too young in the UK to get a yearly mammogram. So no, I hadn’t. I will now. But I’m too young, which again, is something that annoys me.

We know our bodies and I knew back in August that there was something wrong and I should have pursued that straight away. 

Expanding what we know about breast cancer

Although looking for lumps is important, we need to get rid of that narrative of lumps and no pain [means cancer], and then going to our doctors and being quite insistent because again, it’s my second rare cancer. 

When I looked up inflammatory breast cancer and saw it was 1% or 2% of people, I thought to myself, “I can’t have another rare cancer.” It’s like I’m winning the cancer lottery. Cancers that are rare, someone has to get them. I have checked and they’re saying that there’s no link between the 2 [cancers I’ve had]. I’m just incredibly lucky. 

Although looking for lumps is important, we need to get rid of that narrative of lumps and no pain [means cancer].

Nikki didn't believe she had cancer because her symptoms were atypical for common types of breast cancer
Advocating for inflammatory breast cancer

Unfortunately, we have to educate ourselves because when we meet a GP or even an oncologist who doesn’t specialize in inflammatory cancer, we have to advocate for ourselves more than we should. I do that in my appointments where you have to act really fast with this cancer because it’s aggressive. 

When I’ve had to wait longer for chemo than I wanted, I did question that. When I worried that my gap between surgery and radiotherapy is going to be longer than it should be, I questioned that and raised it as a concern. We, unfortunately, have to educate ourselves. 

There is an Inflammatory Breast Cancer Network that has really good information. That’s really helped me understand my treatment journey because sometimes oncologists talk in jargon and I come away thinking I’m quite intelligent. But sometimes I come away and I say to my husband, “Not quite sure what she said,” so I check and then I understand.

We have to educate ourselves because when we meet a GP or even an oncologist who doesn’t specialize in inflammatory cancer, we have to advocate for ourselves more than we should.

Describe being told about your secondary cancer diagnosis

I was with my husband when they told me. There was the surgeon who was doing the biopsy and a nurse. I think the nurse picked up that I’m not really into physical affection from strangers. If people hug me, I’m like, “Oh, God, get off me.” As the doctor told me that it was cancer, she said to me, “Do you mind if I hold your hand?” She gently stroked my hand and I had tears rolling down my face, but she knew that I wouldn’t want her to wipe the tears away. 

That was me processing it in the room and my mind just went to really dark places. I told my husband immediately because he was in the hospital with me. 

Quality of Life

Sharing a cancer diagnosis with family and children

[My husband] let immediate family know because telling people was the thing that I found hardest. As selfish as it sounds, I don’t want to have to deal with your reaction because I’ve got it all going on in my head. When you tell someone, you have to deal with their reaction, and I totally understand that. But for the first few months, I couldn’t tell people. At work, I just sent a very flat email. 

Nikki explained to her young son that she had breast cancer with the help of a book
Nikki chose not to use the word cancer with her son
It was difficult for Nikki to share her diagnosis with others

With my son, we took some advice because I didn’t know how to tell him. He’s 7. He was 6 back then and he’s not a particularly mature age 6. My nurse gave me a book that’s called “Mommy Has a Bubble in Her Boob,” and that’s how we explained it to him. We said that Mommy’s got a bubble in her boob and it’s making her very tired. It’s going to make her hair fall out because that’s the thing they notice. I was going to be tired for a while, but then I’ll be okay. 

We let his school know that it was aggressive, that it was unsettling the family, that we were going to be struggling with homework and that just us functioning as a family was enough. We couldn’t do all the other stuff. But he seems to have handled that quite well. 

We haven’t used the “cancer” word in front of him because he doesn’t understand the word. He could go into his school and say it to an older child and they would say – not being unpleasant – “Is your mummy going to die?” I’m not going to die, so he doesn’t need to hear that.

»MORE: How to Talk to Kids About Cancer

How has your husband adjusted to your cancer diagnosis?

We need to get better at supporting the partners of people who have cancer.

Nikki shares the importance of asking after one's spouse when dealing with a cancer diagnosis

He’s been wonderful, but he’s found it really hard. He had quite a formidable wife who had a very full life, lots of hobbies, and was very into her career. He’s watched a lot of that spirit drain out of me. I was also very independent and I’ve become dependent and I don’t like that. 

He doesn’t begrudge helping me, but I think he doesn’t like that because that wasn’t the kind of wife that he married. So we found it hard. I think there’s this sort of fairy tale that illness brings couples closer together. I’m not quite sure that’s true. It’s tested our marriage and we will survive because we love each other a lot, but we’ve had to renegotiate our relationship like lots of couples had to in COVID. 

We also found COVID difficult because we had to renegotiate how we lived our lives. We’re probably a little bit stuck in the mud. So it’s been really hard. 

Also, nobody asks after the partner. They do ask after my children. They do ask after me. Nobody asks how he’s doing. He’s working full-time. On my bad days, he’s cooking all my meals, tidying up, and doing more for our son. He’s stuck with me if I’m crying in the night and then getting up in the morning and doing a full day’s work. It’s been really hard. We need to get better at supporting the partners of people who have cancer.

»MORE: 3 Things To Remember If Your Spouse Is Diagnosed With Cancer

What happened after you were diagnosed with breast cancer?

I was sent to another specialist who was really guarded and he wouldn’t answer many questions. I said to him straight away, “I’ve Googled. This is inflammatory breast cancer, isn’t it?” He said, “We can’t say that until we have all the information.” I respect that, but at the time I found that really frustrating. 

Then they collect information from all the scans, and I had a letter within a few days that confirmed that it was inflammatory, hormone positive, in my lymph nodes, grade 2, and they laid out what my treatment plan would be. 

I was told that because it’s aggressive they have to get it as small as they can before they do surgery. So I don’t have a single lump. The cancer is diffused through my breast. That makes it harder to treat when it’s harder to see. It can be really tiny. 

What cancer treatments were you on?
Nikki was on the Red Devil and docetaxel chemotherapy

Initially, they said 6 rounds of chemotherapy. I had what is known as the Red Devil for 3 rounds. I didn’t find that that bad. Then I’ve had 4 rounds of docetaxel, which I found really hard. Then I will have roughly about 3 to 4 weeks off to recover from chemo. I’ve got a surgery date of the 9th of June and I’m going because I’ve had such a good reaction to chemo.

They gave me a seventh dose because, although I’m currently no evidence of disease, the cancer is so tiny that it is likely to be there. They said because we know it’s battling the cancer, we might as well do it again. So I’ve had 7 rounds of chemo and then I have recovery time. Then I’ll have a single mastectomy.

I won’t have a reconstruction for at least a year because the surgery can make the cancer angry. They want to make sure before they do anything else that it’s cancer free. You don’t want to rebuild the breast and then find the cancer is in there. 

After surgery, I’ll have recovery time. Hopefully, within about a month I will then have radiotherapy, which will be every day for 3 weeks and then I will be on hormone therapy for years after. 

What’s your doctor’s outlook on the surgery?

They’ve said to me they’re really confident that the cancer is going to go, so a lot of what we’re doing now is making sure it doesn’t come back because it’s got a high remission rate. I am incredibly lucky because, as I said, for most women, it’s gone somewhere else. I’ve had 2, maybe 3 PET scans, and there’s no sign of cancer anywhere else in my body. It can spread in weeks and go elsewhere in the body. That’s how aggressive it is.

Nikki after her single mastectomy surgery
How did doctors respond to you feeling guilty about not being seen sooner?

They were very careful with me because they knew that I had all these feelings about not going to the doctor when I should have. Once they knew that [cancer hadn’t spread], then they said how lucky I was.

Chemotherapy & Side Effects

Describe hair loss after chemo

With EC, I completely lost my hair after the second treatment. I think it started to go within 2 weeks of me having the first chemo. 

I’m quite vain. I had silvery gray hair that I was incredibly proud of because I thought it was a bit of a feminist statement. I stopped brushing my hair and my husband used to laugh. Everywhere I went, I left hair behind me. I said, “Look, I’m keeping a hold of my hair.” I wasn’t. I just wasn’t brushing my hair so none of it was coming out. 

I went to the hairdresser for a chemo cut and she cried. I didn’t cry. She did because so much came out in the sink. I then took control and shaved it and that made a massive difference because my head was sore. 

Nikki's chemo haircut
Nikki after shaving her head due to chemo
Nikki trying on a new wig

It’s really distressing to lose your [hair]. I’d have a bath and it would all be in the sink. It was just horrible. So that would be a recommendation from me, to shave it. Even if you do what I did, where you get a really short chemo cut and then you shave it 2 weeks later. I don’t think I could have gone from quite long hair to shaved. 

In terms of my eyebrows, I didn’t lose them until I started docetaxel and I thought I was going to keep them, but docetaxel saw the back of those. 

How did you feel after chemo?

With EC, it was mostly nausea and tiredness but not much else. Docetaxel, that’s a completely other beast. 

I’ve had what they call hand and foot syndrome. I’m on top of it now because I’m taking a steroid cream, but basically, your hands peel and blister as well as your feet and get really sore. There was a time when my feet were covered in blood blisters. It made me not want to walk and then you walk funny. You walk on the side of your feet and then that blisters the side of your feet. I wish I’d told the oncologist about that sooner because they gave me hydrocortisone cream which sorted my hands. 

Nikki was able to help heal hand and foot syndrome thanks to her doctor giving her hydrocortisone cream

My feet haven’t been too bad this round. I kept on top of that though. My husband bought me a foot spa so I would ease the pain in my feet. I had foot creams and balms that softened my feet. If I did that every day, I could just about keep on top of it. But when you’re tired, it’s quite hard to keep up that sort of routine. 

Do you still have your nails after chemo?
Nikki's doctor recommended she paint her nails a dark color

I haven’t lost my nails. I’ve still got them. My top tip that my oncologist told me was to paint my nails a dark color, so I haven’t lost any. I’ve done the same with my toenails. as well. It makes you look and feel better when they look nice. My nails are very sore at the moment. I’m hoping I’m going to keep them, but I am a little bit worried. 

How do you cope with pain?

I have really bad pain in my bones and part of that is to do with the injections I have to boost my neutrophils because your immune system takes a real dive after chemo. I take an antihistamine, which is Claritin every day. That helps. 

I also take codeine. I try only to take it in the evening because it makes me sleepy and drowsy and it also makes me feel a bit nauseous and the chemo makes me nauseous. I have learned that there will be 3 or 4 days where I have to be ahead of the pain and I take the codeine 4 times a day. For the rest of the difficult bit of the cycle, I try to take it before bed because it helps me sleep. 

Describe how chemo changed your sense of taste 

I have the most awful taste in my mouth all the time. I brush my teeth obsessively because my teeth feel odd. You can get Difflam, a special mouthwash that prevents mouth ulcers, but the corners of my mouth crack. If I have a sandwich, I have to make the sandwich really flat because I can’t open my mouth very wide to eat it. 

I have lots of boiled sweets just to take. It’s like a metallic taste, a bit like morning sickness, but I’m not going to get a nice baby. Sometimes I have mint ones, but any kind of boiled, fruity, sweet, or mint sweet – it doesn’t really matter. You just want something that takes the taste away. 

Nikki with her daughter
Nikki eats boiled hard candy to get rid of a bad taste in her mouth caused by chemo

You probably want to avoid things like lemon sherbet or anything that could be a bit abrasive in your mouth. I made that mistake once. I’ve been told that pineapple can be quite good for your mouth as well. We have a drawer full of ice lollies for when my mouth feels a bit sore or to get rid of the taste.

What other side effects did you experience from chemo?

My sleep patterns have been ruined by steroids and pain at night…I have such a long list…I also have, constant pins and needles in my hands and feet. I think that’s to do with the hand and foot syndrome. When your feet are really cold and they hurt, that’s what it feels like. I have an electric blanket that I put at the bottom of my bed. I think that helps a little bit. 

I’m losing my fingerprints. My mum Googled today and apparently, they will come back. But the tips of my fingers are really smooth and I can see that my fingerprints are going and then a pain in the joints of my fingers as well. 

Nikki's sleep has been negatively affected by medications

My energy levels are really low. There were days I struggle to get out of bed and get dressed. There are days when I can’t walk more than 100 yards. 

»MORE: Cancer Treatment Side Effects

My temperature is all over the place. I think that’s menopause. Because my cancer’s hormonal, they were worried about it jumping to my ovaries so I’ve been plunged into early menopause. I’ve got really bad hot flashes. If I do anything, my temperature goes up and I’m supposed to go into hospital if my temperature goes up. I’ve learned to just wait before I take the temperature. That keeps me awake at night and adds to that tiredness…It’s a long list.

Another one is my eyes water constantly. I can see them doing it now. People are always saying to me, “Are you crying?” I’m like, “No, it’s just my eyes water.” I think that’s because my eyelashes have gone and so things get in your eyes. I don’t think my eyesight has been affected, but my eyesight looks quite blurred because it’s always a little watery. 

Being A Patient Advocate

Nikki shares the importance of speaking up

Speaking up means that, you’ve done all that you can…I learned from not going to the doctor when I should have that I regretted not speaking up. That inspired me to speak up and ask questions.

Describe how self-research helped you advocate for yourself

I like to read and research, so I did lots of research. I write things down before I go in because I’m likely to forget them. I try to take my husband to my appointments with me because he will remind me, or if I’m not feeling very brave, he will say, “Nikki, there was a question you wanted to ask. Why don’t you ask it?” Because sometimes you do feel overawed by doctors. 

On Facebook, there’s an Inflammatory Breast Cancer Network that I think is mostly women in the UK. They have representatives from the inflammatory breast cancer charity, so being able to ask them questions has been useful. 

Also if something worries me, I go on there and search for what it is. Sometimes just seeing that other women are having the same symptoms as me makes me feel a bit braver to then say, “Actually, I’m really struggling with this. Can I have some help?” 

Nikki shares the importance of advocating for yourself as a patient

For example, when there was a delay with my chemo, I said, “Is there an unreasonable delay?” They said, “Yes, there is” and linked me to research papers or articles. I could then go back to the oncologist and say, “I’ve looked this up and I’ve read this. This isn’t just a quick Google, and I think I should be having chemo quicker.” I’ve done the same with radiotherapy as well – I’ve let them know that I have researched this. 

»MORE: How To Be A Self-Advocate As A Cancer Patient

I do want to say that no one’s deliberately delaying treatment, but because my cancer is very different from other breast cancers, I think you do have to keep reminding people of that.

Why did doctors delay your chemo treatments? 

Partly because of the time of year. I had my proper diagnosis in mid-December, and then we went into Christmas. I was unlucky at the time of year. People were going on holiday and the NHS in England is struggling so that has been an issue. The care I’ve had I can’t criticize at all, but I have had to wait for that initial chemo longer than I would have wished.

The importance of advocating for yourself 
Nikki says that speaking up means that you've done all you can to advocate for yourself

It did make me feel like I’ve spoken up. I wouldn’t have liked to have waited and then be at home thinking, “You haven’t spoken up again, Nikki.” Speaking up means that, you’ve done all that you can. I learned from not going to the doctor when I should have that I regretted not speaking up. That inspired me to speak up and ask questions. Having a little notebook and writing the questions down is a good thing to do when you go to the doctor anyway, particularly for this.

Reflections

How has humor helped you?

I have a small group of female friends that I’m more open with than my husband because we can do dark humor. My husband struggles a little bit with the dark humor. That has been really valuable, being able to make “cancer’s getting on my tits” kind of jokes or, laughing at “something else has fallen off my body.” That kind of humor has been really good. Female friends, close friends, are really important.

Nikki finds dark humor helpful
Continuing to work through cancer
Nikki continued to work from home during her cancer treatments

Listen to your body and do what works for you, not what you’re told to do. For example, I’ve kept working through most of my treatment which my husband hasn’t really agreed with, but that helps me remain mentally strong. I think we know ourselves and we can, within reason, navigate a path that works for us. 

What works for one person doesn’t work for another person because their cancer will be different or their job, or their lifestyle. I’ve possibly done things in quite an unorthodox way, but I wanted to prioritize my mental health as well as my physical health. I think now that I’m almost at the end of my chemo journey, I made the right decision.

Checking breasts more thoroughly

We need to take pain seriously…If our body hurts, there’s a reason for it.

Even looking for a lump, I don’t think we really know how to do it. My oncologist said to me, “Did you check your breasts, Nikki?” I said yes because I did. She showed me how to do it and said, “Was that what you did?” I said yes, thinking no. It’s a lot more of a thorough process than we’re [told to] do. 

She said to me, do it both lying down and sitting up, whereas often we’re told to do it in the shower. We don’t lie down in the shower, so I think we need to be more relaxed around our bodies and look at our bodies. Then you will notice the changes. Even my change, which was little, I did notice it. 

Nikki encourages people to check their breasts more thoroughly

Also, we need to take pain seriously. I think women because we give birth and it hurts underplay pain and we just take a painkiller and say, “Oh, it’ll go away.” If our body hurts, there’s a reason for it. Not just feeling for lumps, but properly looking at your boobs. 

The other thing that can happen is your boob can swell. It can also feel quite heavy and warm. Looking back, mine did. Again, I just thought that was a period or menopause [symptom] but that was happening as well. [We need] more education about non-typical breast cancers because they’re more deadly at the moment.

What did your breast pain feel like? 

Anything that doesn’t look quite right we need to take seriously.

Sharp, piercing pain. A little bit like when you’re breastfeeding wrong is exactly what it felt like.

It was very focused around the nipple. I had times when my whole boob felt a little bit achy and that might be the menopause, period kind of feeling. If it’s a pain that’s focused on the nipple, that is one that I would take very seriously. 

The other thing that can happen is your nipple can change color and mine had slightly. Because I didn’t pay much attention, I hadn’t noticed that. Again, when the oncologist did a physical exam, she said to me, “Can you see that one is a slightly different color, Nikki?” Anything that doesn’t look quite right we need to take seriously.

Difference in nipple color was a sign of breast cancer in Nikki's case
Swollen, warm, heavy-feeling breast was a sign of breast cancer
Centralized pain around the nipple was a sign of breast cancer
How do you deal with scanxiety?

Scanxiety is awful. I know you’re told not to Google, but we’re human and you do. Remember that the advancements in cancer over the past 3 to 5 years have been huge, particularly with inflammatory breast cancer. If you’re looking at something that’s more than 3 to 5 years old, close it. 

Go to reputable sites like Macmillan or the Inflammatory Breast Cancer Network, because we are going to look for that information. That’s how I cope with scanxiety and I try to plan some nice things. 

Remember that the advancements in cancer over the past 3 to 5 years have been huge, particularly with inflammatory breast cancer. If you’re looking at something that’s more than 3 to 5 years old, close it. 

Surgery worries me. It’s a big surgery that I’m having and also I’m having a bit of my body removed that I’m quite attached to, and I don’t think I’ve quite dealt with that yet. I have booked some counseling because I think I’m in denial about how hard that’s going to be. Having someone to talk to who is someone I don’t know that I can be really honest with, I think is going to help me process that a little bit.

What is your top advice to someone on a cancer journey?

Try and find joy, as daft as it sounds, because it’s not going to harm you and it might help. I’m not a woo-woo person at all, but when it comes to laughter and joy, I try to find a little bit every day. 

I often sleep in the hammock, in my garden, in the sunshine, and that’s better than sleeping in my bed because I can hear the birdsong and I get some fresh air. 

I try every day to save a little bit of energy to do something nice with my son. We do lots of arts and crafts and baking. Baking with a 7-year-old, something is going to go wrong and it’s funny. Or making time to chat with friends and laugh and do inappropriate humor. Doing fun stuff so you’re not just an ill person I think is really, important.

Nikki recommends everyone find joy in their cancer journey
Nikki enjoying the sunshine

Try and find joy, as daft as it sounds, because it’s not going to harm you and it might help…When it comes to laughter and joy, I try to find a little bit every day.

More Breast Cancer Stories

Amelia

Amelia L., IDC, Stage 1, ER/PR+, HER2-



Symptom: Lump found during self breast exam

Treatments: TC chemotherapy; lumpectomy, double mastectomy, reconstruction; Tamoxifen

Rachel Y., IDC, Stage 1B



Symptoms: None; caught by delayed mammogram

Treatments: Double mastectomy, neoadjuvant chemotherapy, hormone therapy Tamoxifen
Rach smiling against fall leaves

Rach D., IDC, Stage 2, Triple Positive



Symptom: Lump in right breast

Treatments: Neoadjuvant chemotherapy, double mastectomy, targeted therapy, hormone therapy
Caitlin

Caitlin J., IDC, Stage 2B, ER/PR+



Symptom: Lump found on breast

Treatments: Lumpectomy, AC/T chemotherapy, radiation, hormone therapy (Lupron & Anastrozole)

Joy R., IDC, Stage 2, Triple Negative



Symptom: Lump in breast

Treatments: Chemotherapy, double mastectomy, hysterectomy
Categories
Breast Cancer Patient Stories Uncategorized

Sarah’s Stage 3 ER/PR+ HER2- Breast and Salivary Gland Cancer Story

Sarah encourages everyone to talk about cancer

Sarah’s Stage 3 ER/PR+ HER2- Breast and Salivary Gland Cancer Story

Interviewed by:

Stephanie Chuang

Sarah McDonald was recently married and promoted to an executive role at eBay when she noticed a lump in her mouth. Despite doctors assuming the lump was not a concern, she pushed to have it examined and removed. Test results revealed the lump was salivary gland cancer.

This led Sarah to reexamine a lump she discovered in her breast 6-years earlier, which doctors had said wasn’t cancerous. She and her doctors discovered that she had stage 3 breast cancer, thus catalyzing her double cancer journey. 

In the midst of her cancer battle, Sarah grappled with her father’s prostate cancer diagnosis and dreams of having a baby. Her treatments led to the heartbreaking news that she may not be able to get pregnant. But after her doctor discovered new research about pausing treatment for IVF, Sarah delivered her daughter at age 48.

Sarah shares her incredible cancer journey with us, as well as in her book, The Cancer Channel: One Year. Two Cancers. Three Miracles. and at medical conferences and corporations. She hopes to give cancer patients a voice, to help them feel seen, and to get people to talk more about cancer. 

Sarah and her husband Jeff
  • Name: Sarah M. 
  • Diagnosis (DX):
    • Salivary gland cancer
    • Breast cancer
      • Invasive Ductal Carcinoma
      • ER/PR+, HER2-
  • Staging: 3
  • Symptoms:
    • Lump in mouth
  • Age at DX: 44
  • Treatment:
Sarah's Timeline

Life was very black and white for a while there, and it went back to Technicolor when we started to believe that I would live.

Sarah M.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table Of Contents
  1. Symptoms & Diagnosis
  2. Being A Patient Advocate
  3. Processing A Cancer Diagnosis
  4. Fertility & Pregnancy
  5. Survivorship 
  6. Reflections

Symptoms & Diagnosis

Tell us about yourself

I’m a people person, fully engaged in life, and an extrovert. I am into food, reading, hiking, and music. I’m a singer, a former athlete, a mama, and a wife.

I sing in a vocal jazz group, it’s a women’s acapella group, and I sing alto 1.

What would the summary of your cancer journey say?
Sarah's life trajectory changed when she discovered she had cancer

The summary says, at age 44 Sarah was newly married, newly promoted at work, and considering pregnancy. Then, all of that was blown up when I received my first cancer diagnosis which was an incurable cancer diagnosis, followed 2 months later by a second unrelated cancer diagnosis. 

The book is about my fertility journey that was cut short, being diagnosed and then treated for 2 separate unrelated cancers. At the same time, my father’s cancer which had been in remission for 10 years, came back. He and I actually went through cancer treatments until his death that year together. It made for a very interesting time and made our relationship even tighter. 

Two years past treatment, I was able to carry a child and give birth to our little girl. The name of the book is The Cancer Channel: One Year. Two Cancers. Three Miracles. I had a whole bunch of different titles for the book, but Cancer Channel is where I landed.

What were your first symptoms? 

I had just been promoted into a new role. I went from managing a very large team to being an individual contributor. I had some extra time so I thought I would go do all of those doctor’s appointments that I had been putting off, which is always an ominous beginning to a story. 

I went to the dentist and had a deep cleaning of my teeth. A week later, I noticed a lump in the floor of my mouth. I had never noticed it before and I thought it was probably an infection. That was the first symptom, a lump.

I guess the tumor finally reached a size where I would notice it. It was a very slow-growing tumor. The doctor said it had probably been there for a while. There was no pain. I wasn’t having dry mouth. There was no other indication other than a lump that didn’t hurt at all. It was just a weird lump.

Getting the lump examined and diagnosed 

The dentist said it could be somewhere on the spectrum of just an infection to a rare form of cancer. She said, “You should go see a specialist.” So she referred me to a specialist who referred me to another specialist. I had a number of scans and I think it was the second or third specialist who said, “I’m not really knowledgeable in this kind of oncology, but I think I might see a malignant growth in your mouth so I’m going to refer you to another specialist.” 

I had an indication that there might be a malignancy, but I honestly didn’t believe it. I said, “He doesn’t really know that much about these things. I’m sure it couldn’t be a malignancy. It couldn’t be cancer.” But I did pursue it with another specialist who eventually had me do a fine needle aspiration (FNA). That was when they said it sure is cancer.

What were you thinking before your diagnosis?
Sarah's doctor gave her incorrect information

He called me on the phone and said, “I know I told you that it wasn’t cancer, but I was wrong. It’s cancer. And it’s this really rare form of cancer that’s incurable.”

I was not worried because when I would see specialists they would palpate the tumor and say, “I’m not sure what it is but it’s not cancer.” The specialist that called me to diagnose me was the one who had ordered the FNA.

When he had seen me in person, he said, “This is definitely not cancer.” He made me out to be a hypochondriac. He said, “You’re just making a really big deal out of this.” I thought, okay great. I’m glad that I’m making a big deal out of it and that it’s not going to be cancer. 

But then he called me on the phone and said, “I know I told you that it wasn’t cancer, but I was wrong. It’s cancer. And it’s this really rare form of cancer that’s incurable.” I started asking him questions and he said, “I don’t know anything. I’m on the internet looking it up.” So he was going to refer me to another specialist. I said, “Can you and I call that specialist right now?” He said, “No, I’ll write a letter of recommendation for you.” 

Being A Patient Advocate

There’s no one who’s going to care more about your health than you, so you need to be an advocate for yourself and speak up even when other people are not trusting or are questioning you.

How did you feel about your doctor disregarding your concerns? 

He didn’t use those words, but research says that communication is 7% the words we use and 93% is body language and tone. So it’s very clear to me in speaking with him that he thought that I was just making too big a deal out of it. Then it turned out to be cancer. 

Even though I didn’t believe it was cancer, I wanted to understand what it was and I thought we should get it removed. So I kept pursuing everyone. Each time I would approach a specialist, they’d say, “I can see you in 6 weeks to 3 months.” I kept having to push it in order to get an answer, and when I finally did, the answer was cancer.

How important is it to advocate for yourself?

That is one of the top things. When I do corporate talks or when I go speak to patients, I often say, your health is most important to you. There’s no one who’s going to care more about your health than you, so you need to be an advocate for yourself and speak up even when other people are not trusting or are questioning you. It segues nicely into my second cancer diagnosis. 

Addressing a previous health concern 
Sarah received radiation in her mouth
Sarah underwent radiation for salivary gland cancer

I had the surgery to remove the tumor in my mouth and I was speaking with my head and neck oncology surgeon about the treatment options. I was going to have radiation to treat the salivary gland cancer. 

I said, “I have a whole list of questions. Six years ago, I found a lump in my breast and I showed my OB-GYN. She sent me for a mammogram. We ended up biopsying it. I was told it wasn’t cancer. But given that I have this cancer diagnosis, could it be that it is metastatic salivary gland cancer in my breast and they just missed that? Is that possible?” 

He said to me, “Sarah, you already have one of the most rare forms of cancer there is. When it metastasizes, it likes to go to your brain or your lungs. So if you have a lump in your breast, it wouldn’t be salivary gland cancer. It would be another primary source cancer. And frankly, we just don’t see it in someone so young. But if it’ll make you feel better, you should pursue it.” So that’s what I did. 

Getting a secondary cancer diagnosis

I had to advocate for myself to get the second diagnosis and in a weird kind of world, the salivary gland diagnosis actually saved my life

Sarah reexamined a lump in her breast which led to her being diagnosed with breast cancer

I walked out once again feeling like, I’m making too much of this. But I thought, let me just check back in and put my concerns to rest. I went back to my OB-GYN and she said, “I know you’ve been doing mammograms every year, but you have really dense breasts, and sometimes tumors don’t show up in mammograms. Maybe we should do an MRI.” I thought, why am I just hearing about this now? 

Secondarily, I showed her where we had biopsied the lump in my breast and she said, “Have you ever noticed that the surgical mark and your lump are nowhere near one another? I don’t think they biopsied the lump.” I said, “Oh my God, I have breast cancer.” 

We did another biopsy and at that point, I had stage 3 breast cancer. I had to advocate for myself to get the second diagnosis and in a weird kind of world, the salivary gland diagnosis actually saved my life because it caused me to go back and question the lump in my breast.

What type of breast cancer were you diagnosed with?

Estrogen and progesterone positive HER2 negative. 

On, the aggressive scale, both of my cancers were in the teens. I got super lucky that both were relative.

Processing A Cancer Diagnosis

How did you feel about your diagnoses? 

It seemed ridiculous that there were now 2 cancers. It seemed improbable like cancer was coming to get me. In a way, I relaxed and it accelerated my acceptance of having cancer.

It felt improbable to Sarah that she would have 2 cancers at once

With the first cancer diagnosis, initially, I was numb. I was having trouble processing it. I was diagnosed on a Wednesday. I don’t think I cried until late Thursday afternoon. I was stunned and wasn’t sure how to react and went into project management mode immediately. Like, let me try to control the situation. 

»MORE: Patients share how they processed a cancer diagnosis

Once I recognized it, I was terrified. I felt like I was in fight or flight all the time, in a panic. I call the book “The Cancer Channel” because it switched on a channel in my brain that was playing all cancer all the time. That’s all I could think about. “Oh, my God, I have cancer. Oh, my God. I have cancer.” I was terrified. 

I was strangely ashamed. Still trying to figure that one out. I’m not the only one who has said that. I didn’t do anything to cause this cancer, but there was some sort of embarrassment for having a body weakness. Or maybe it was the embarrassment of talking to people about my mortality or various bodily functions. I was terrified and I wanted to be super private. I wanted to get all of the treatments done, get back into my life, put it behind me, and ignore it. 

With the second cancer diagnosis, there was a certain amount of gallows humor that my husband and I developed. It seemed ridiculous that there were now 2 cancers. It seemed improbable like cancer was coming to get me. In a way, I relaxed and it accelerated my acceptance of having cancer. 

I was very aware that this [could be] the last year of my life. It was highly likely. And if so, what do I want that to look like? How can I live as gracefully as I can? I decided to become a lot more public. After the second cancer diagnosis, I was telling anybody who would listen to me that I had 2 cancers. I started a blog on CaringBridge to keep people up to speed on what was going on and that really became an outlet for me.

Recognizing the importance of relationships

What became very clear to me, is there is nothing more important than our relationships. Maybe everybody knows that. But when I thought I was dying, the only thing that was important was being with my husband, my closest friends, and my family. Nothing else mattered. My to-do list, which had always been as tall as I was, was reduced to, to live. In doing so, I just wanted to be with the people I loved most. 

The most important thing in Sarah's life became her relationships

»MORE: 3 Things To Remember If Your Spouse Is Diagnosed With Cancer

I had been living in San Francisco for 10 years at that point but had been commuting down to Silicon Valley every single day. There were parts of San Francisco I hadn’t explored, so I decided to spend the year exploring the museums, the restaurants, and the little neighborhoods. I did it with friends and my husband. I leaned into all of that.

I haven’t spent a lot of time focused on regret. I just accepted. I had done a lot of things prior and maybe I was coming to the end of being able to do things. 

My to-do list, which had always been as tall as I was, was reduced to, to live. In doing so, I just wanted to be with the people I loved most.

As an executive of a major company, how did your views on work change?

What was interesting to me is the cancer diagnosis was very freeing at work. When I eventually went back after a year of cancer treatments, I returned to work in the chief of staff role to the president of eBay, which was the role I had taken on prior to the cancer diagnosis. 

I didn’t care as much about getting ahead. I still wanted to do an excellent job, to be valued, to be listened to. I wanted a seat at the table. But having stared at my own mortality, I recognized it wasn’t that important for me to continue to push at work.

It wasn’t that I wasn’t still hard driving. It softened my edges and I was now leaning into how people felt about things rather than how efficiently or effectively can we get things done. I cared much more about how people felt about decisions and how we would take care of people in the decisions that we made as the leaders of eBay.

»MORE: Read more on how others dealt with work after a cancer diagnosis

Was there any difference between your rare and non-rare cancer diagnosis? 

When I was diagnosed with salivary gland cancer, I was told it’s super rare, it’s incurable, only 1200 people a year are diagnosed with it, and we don’t have good data. We know that 5 years out, 80% of people are still alive. Ten years out, only 30% of people are still alive. They only had 2 treatments – cut it out with surgery, and then radiate the crap out of it. I leaned in on both. I said, let’s get rid of it and then let’s radiate. 

Sarah received chemo for her cancer treatments

My doctor said it might leave me with dry mouth. I said I can deal with 6 weeks of dry mouth. And he said, “For the rest of your life.” I thought, Oh God. And there are people who have been treated for oral cancers whose reality is now dry mouth for the rest of their lives. I do experience dry mouth, but it’s not extreme. 

With breast cancer, when I received that diagnosis they said, “You have a garden variety type of breast cancer. It’s the most common kind of breast cancer. We have a number of treatments for it and we think we got you. We can cure you of it. We’d like to do our favored protocol. We will start out with about 6 months of chemo in the breast. Chemo erases the footprints of cancer in your body. I just want to make sure it hasn’t gone anywhere else and we’re going to make sure by giving you chemo. It’ll also break down the tumor and make it smaller for us to remove so we’ll have better breast preservation.” 

What treatments did you receive for your cancers?
Sarah was treated for salivary gland caner and breast cancer at the same time

A lumpectomy was an option for me and I decided to go with that option. We did 2 kinds of chemo for 6 months, and then I had 2 different breast surgeries because we didn’t get clean margins after the first one. Then I went through 6 weeks of radiation. 

They treated me for both [cancers] at the same time, so I was getting radiation to the mouth at the same time that I was getting chemotherapy to my body for the breast cancer. 

Chemotherapy intensifies radiation, so after 2 weeks of both radiation and chemo, I said, “I seem to have a little bit of bleeding. Is this normal?” And they said, “It’s normal for 6 weeks in. This is pretty early.” I ended up with 20 cold sores in my mouth and my mouth felt like it was sunburned.

I had a 3 to 4-week period where I couldn’t eat. I would do some chicken broth with truffle salt because it made it better. 

How long did you receive treatments?

I [received] surgery to the mouth, started radiation and chemo at the same time, radiation finished after 6 weeks, chemo goes on, and then surgery and the other radiation. So treatments went over a year. It was a full year.

How did you face your anxiety? 

The cancer battle is as much mental and emotional as it is physical. At least it was for me. I have, a pretty high threshold of pain that was certainly tested by the chemo and radiation.

I was in so much emotional and mental pain and anguish out of all of my fear, that after the second cancer diagnosis, I went to my breast oncologist and said, “I need help. I’d really appreciate it if you could prescribe an anti-anxiety medication for me because I’m so stressed out. I’m in such a high fight or flight that I’m not convinced I won’t have a heart attack before either one of these cancers is able to kill me.” 

So I got an anti-anxiety medication that I would take every day. I called it the “get-the-fuck-over-it-you-have-cancer pill.” I would take the pill every day around 3:00, which seemed to be the witching hour for me. I would hold it together till about 3:00 and then I would just start losing my shit. 

One of my best friends was a yoga instructor and I never felt like I had time to go to her classes and certainly didn’t have the mental headspace to be able to do meditation. She said to me, “You have some of the best Western doctors out there. We’re going to call them Team 1. I’m going to be in charge of Team 2, and you and I are going to lean into Eastern practices.” 

This friend of mine, Tripti, I started taking her yoga class. I started doing meditation. I did guided imagery. I did energy work and she recommended an acupuncturist. I started doing all of those things to try to relax my body and mind so that I could best accept the treatments. 

Sarah discusses the mental challenges of a cancer diagnosis

The cancer battle is as much mental and emotional as it is physical. At least it was for me.

My working theory is that, when I relaxed, the medication was able to work and help save my life. The most important thing was, I relaxed and I didn’t have fight or flight. Then it just became about putting one foot in front of the other. I knew what the plan was. I knew when I had to drive down to Stanford and go for my treatments, and I just did it until I was finished.

Feeling grief over the future

I was 44. I met my husband when we were 38, and I felt like I was busy having a fabulous life. I was so thrilled to have met my life partner, we were pursuing fertility, working with a fertility doctor, and I was so excited about what was to be in my life. I had just gotten promoted into this great role at eBay. I felt like there was so much possibility. Everything was going so right. 

I fell in love with this dream of what my future was going to be. I think part of a cancer diagnosis is the death of a dream. I don’t think that that’s too hard or too dramatic a comment to make. I think it’s the death of what you believe the future is going to be. Similar to mourning the death of a loved one, in this case, I was mourning my potential death. 

I went through all of the stages of grief. I didn’t have the anger – that’s one of the stages – and I never had the “why me?” I unfortunately watch a lot of news and I understand tragedy happens every day. I was a little surprised that it was me, but I didn’t say, “Why me? This is unfair.” It’s no less fair than anybody else getting cancer. But I was in mourning, I was sad, and I was scared.

Grief is non-linear, and what is surprising is how it will catch us. It will catch us. It’s not surprising that a year or 2 after, you can find yourself talking to somebody about it and tears come quickly to your eyes. I have often described it to people as having a wound on the skin that you keep touching, and it just comes back and shocks you and you’re like, “Oh my God, it’s still so close to the surface.” 

Sarah grieved over her future dreams during her battle with cancer

I think part of a cancer diagnosis is the death of a dream…the death of what you believe the future is going to be.

I’m now at the point where I can talk about it and laugh. I’m also 10 years out, so that’s a different perspective as well. With breast cancer, the important years are 2 years out, 5 years out, and 10 years out. And generally, they will declare you cured of breast cancer if in 10 years you haven’t had a recurrence. Salivary gland cancer doesn’t have the same type of thing, but I’m in the 30% of people who are surviving that cancer.

Can you reflect on surviving two cancers?

I really think it comes down to being lucky. I also had terrific treatments and I don’t mean to downplay that the doctors were amazing at Stanford. They coordinated my care and both teams of doctors were checking in regularly with one another. They also checked in with me as a whole person, so I felt comfortable talking with my breast oncologist about getting anti-anxiety medication. Every time I talked to her, she would walk into the room, she would grab my leg, she would look in my eyes and she’d say, “How are you doing?” It was amazing. 

When you are so stressed out, you think, “Oh my God. I’m going to lose it in front of her. I’m going to cry.” I think the only time I cried in front of her was when she told us we couldn’t have a baby. Other than that, we had very open, honest conversations. 

Fertility & Pregnancy

Did you discuss fertility with your oncologist? 

After getting the second cancer diagnosis, my breast oncologist called my husband and me back and said, “I understand you were going through fertility treatments here at Stanford when you received your cancer diagnoses. Can you tell me what you’ve heard about your fertility?” She always speaks this way. I try to remember to always ask people “What have you heard?” Because it’s what my understanding is.

I said, “In the event, I live past this year and we get through all the treatments, my fertility doctor said maybe in 2 years’ time we could take the embryos and we could do IVF.” I was 44, so I would have been 46. My breast oncologist looked at me and said, “Sarah, once we finish this year of cancer treatment for the breast, I’m going to put you on hormone therapy. A medication that suppresses your estrogen and progesterone that we’re feeding your cancer, and you need those for pregnancy. I’m going to have you on that for the next 10 years. You’ll be 54 when I take you off those medications and you will no longer be a candidate for IVF.” I looked at my husband and he had tears welling up and he said, “It’s too much.” 

Sarah believed her dreams of fertility to be cut short

He and I often talk about it. We were pretty sure I was going to die. How it is that we thought we were going to have a baby 2 years after I would die, I’m not really sure. But we still held out hope that somehow I was going to survive and that we would have a baby. Then to be told, “You have not 1 but 2 cancers and you will not be able to carry a baby” was devastating for us. 

A new study reopened fertility discussions 

The great news was, 2 years after we finished cancer treatments and I was feeling optimistic that I might live, I went back for my 2-year check-in with my oncologist. I told her, “We’re feeling bullish and we’re looking into surrogates for the embryos that we have on ice.” 

She said, “Sarah, I’m so glad you remind me of this because there’s just been a study done in Europe on Belgian and German women who have breast cancer, who willfully took themselves off the same medication that you’re on. They got pregnant, had babies, and then went back on their medications and we haven’t seen a higher incidence of recurrence. So if you want to have a baby, let’s do it.” 

That was pretty amazing news. I went home to tell my husband and he said, “I don’t think this is a good idea.” I said, “Are you kidding me? We’ve just been told we can have a baby.” He said, “But can they guarantee that your cancer won’t come back?” I said, “Sweetie, we never have a guarantee that either of these cancers won’t come back. So really the question is, how do we want to live our lives knowing that? I want to have a baby, I want to experience that.”

So we did IVF and miracles of miracles, I got pregnant and at 48 I had a little baby girl.

Tell us about your daughter

She’s almost 7. Or she would tell you, 6 and 5/6th right now. Her name is Rory Elizabeth MacDonald. I love the name, Jodie. Geoff [my husband] was not into Jodie. 

We decided we were probably only going to get to do it once, so we thought it would be most fun if we didn’t know the gender, so we wanted a name that would go either way. We’re not the only people who have thought of this. A lot of people go for the gender-neutral name. I said to him, “Here’s another idea. What about Rory?” And he said, “Oh my God, I love it.” Because our last name is McDonald, all of his cousins and brothers have named their children very Scottish-sounding names. So she is Rory McDonald.

Survivorship 

How did you get through your cancer diagnosis and treatment?
Sarah found solace in breath work and meditation

We weren’t sure anything was going to be good. It was just one foot in front of the other. I’m going to sound very much like somebody who does meditation, but I focused on breathing. When I find myself getting sad and convinced that I’m going to start crying, the only way I can stop is by breathing through it. 

We focused on the everyday, and I went through the treatments as I could. My breast oncologist said to me, “The chemo is doing everything we need it to. Your tumor is breaking down.” Once it had been removed and I did the radiation, she said, “I think we’re good here.” It started to feel like the future could be bright again. 

Life was very black and white for a while there, and it went back to Technicolor when we started to believe that I would live.

What’s your advice to someone struggling with anxiety?

A lot of people experience mental anguish and anxiety. I think there’s shame associated with it. Recognize when you need help. At what point is there no going back? 

How did I know it was bad enough to ask for help? I could never relax. I couldn’t get a break, and I had trouble going to sleep at night. I woke up early. Some people, when they are stressed out, they go to sleep. I am the opposite. I stop sleeping, so I wasn’t getting rest. Then you get into a spiral because you’re exhausted all the time and you’re crying all the time. I said I need a break from this. 

I was beyond embarrassed because I was now, negotiating the end of my life. I thought I don’t want to be this stressed out during this. So my advice for people is you have to take care of yourself just like you would a child who you want to protect and support and nurture. When they are in pain and you want to alleviate that pain, you need to do the same for yourself. I recognized, that if I was going to get through, I needed to smooth out some of the sine waves. I needed to have less of a roller coaster.

[My doctor] gave me the lowest dosage. I would have upped it. There are a lot of people self-medicating with CBD now, and I suggest, if that is what you need to help you get through the tough time, do it. 

I also believe in spending some time on Eastern practices. I personally am not a big medication person. I like to believe that my body can take care of things, but sometimes you do need them. I got into the breathing and the meditation and I found guided imagery super helpful to accelerate the mourning process. 

Sarah found relief from anxiety in guided imagery
What is guided imagery and how did it benefit you?

Guided imagery, for people who are not aware of it, is like meditation but someone’s talking you through it. You don’t have your brain running off like so often you do in meditation, where you have monkey brain and it’s doing all sorts of other things when it’s supposed to be meditating. With guided imagery, someone talks you through a story or a journey. I was blown away by the connection of the head and the heart and the head and the body. 

This woman is talking about me walking on the beach and I was sobbing. I did that every day for 6 weeks. I was able to mourn the loss of the future I had envisioned and that’s when I was able to start relaxing.

Tell us about your dad

His name was Paul Brubaker. Dad was an introvert but loved people. He was the guy that was, in a non-threatening way, flirting with the bank teller. He knew everybody’s name and really enjoyed being involved in his community. 

He did a lot of fundraising. He coached my brother in sports. My mom coached my sister and me. He was big, loving dad and was horrified when I was diagnosed with cancer. He said, “Oh my God, Sarah. Did I give this to you genetically?” I said, “No. As far as I understand, there is no relationship between prostate cancer and salivary gland cancer or breast cancer. We’re just very lucky people.” 

»MORE: Breaking the news of a diagnosis to loved ones

He loved to joke, loved to sing. Big tennis and sports fan. Very competitive, not always in a nice way. He went to the University of Michigan to get his Ph.D. and he loved Michigan sports. So much so, that when we were having the conversation about chemo, he said, “It might be worth extending my life just to see if Michigan can have another winning football season.” And he was serious. A couple of years ago, Michigan won the Rose Bowl, or something like that. We all said, “Dad was looking down on that one.”

What was it like being diagnosed with cancer at the same time as your dad?

He was diagnosed at 64 with prostate cancer, which is a really awkward age to get diagnosed with prostate cancer. They often won’t even treat men in their 80s or 90s. They say that you’re going to die from something else before you die from prostate cancer because it’s so slow growing. 

They were recommending surgery that could have side effects, including incontinence. Dad was pretty focused that he didn’t want to be in a diaper. Or he could just do radiation and pulverize the cancer. He spoke with a couple of oncologists and chose radiation. 

Unfortunately, 10 years later he came to visit us in San Francisco right around Christmas. He’s in Southern California, so it’s warmer down there. It’s a cool, wet December and he couldn’t get warm. He kept saying, “I can’t get warm and my bones are aching.” I said, “You need to go talk to your doctor and see what’s going on.” The cancer had metastasized to his bones, so he had prostate cancer in his bones. Then I was diagnosed. We were quite a pair. 

How did your dad react to his cancer diagnosis? 

I said with my first cancer diagnosis, I was really private. But with my second I wasn’t. I also knew that I was going to be going through chemotherapy and that I would be bald for a period of time so it was going to be public. 

Sarah experienced hair loss with her second cancer diagnosis
Due to hair loss, Sarah had to be public about her cancer
Sarah and her dad took different approaches to their diagnoses

My dad was super private about his cancer and didn’t want anyone outside of our immediate family to know. And when the cancer had metastasized, his oncologist said, “We should talk about chemotherapy.” My dad said, “No. I’m not going to do it.” I said, “Dad, what do you mean you’re not going to do it?” He said, “I don’t want to be bald and I don’t want people to know that I have cancer.” I said, “Dad, it might save your life.” 

»MORE: Dealing with hair loss during cancer treatment

He probably turned down chemo for 6 or 7 months before he finally agreed to do it. By that time, the cancer had progressed more and he felt so lousy every time he got chemo. 

Sarah was not debilitated by chemotherapy

I did not have huge side effects from chemo. I was dry. They talk about how everything becomes dry, and I would get really flushed and I had some nausea, but some bodies are really debilitated by chemo. That was not my case. I could do chemo and go running the next day. I know that’s unusual. 

My dad went from playing singles tennis to not being able to walk around the circumference of his house. He was using a walker and just feeling lousy all the time. Eventually, he stopped chemo and said, “With the time that I have left, I don’t want to feel lousy all the time.”

To be clear, I was still living in Northern California and he was in Southern California. I would go visit. I wasn’t working. I was on long-term disability so I could do my chemo and then fly down south to spend a couple of days with him, which I was prioritizing. 

Did your relationship change with your dad after your diagnosis? 

What was remarkable was the change in our conversations. We could have much more open conversations about the failings of our bodies, but also, how we were feeling about our mortality. I don’t think he was having those conversations with my mom, not wanting to give a voice to his eventual death. But we could have conversations about it and about his frustration that his cancer was spreading, his frustration that the medication was no longer working. 

He said, “Why is it working for you and it’s not working for me?” He was my father, so we should have very similar bodies. But we do have different bodies. We had different cancers, different ages, different stages of cancer, and different aggression levels, and he had delayed his treatment. 

Sarah beginning radiation
Sarah completing radiation
Sarah with her radiation certificate
Describe what it was like making different cancer care decisions than your dad

It was remarkable to make different decisions from someone that I love, like his decisions on chemo and his decision to delay. I had to do a lot of accepting that we were doing cancer differently and that it wasn’t up to me to tell him how to do it. I learned the hard way. 

I suggested because he was having heart issues as well, “Your doctors are coordinating your care? Your oncologist is talking to your cardiologist, right?” He said, “I don’t know.” I said, “Doesn’t it seem like they should know about the medications that one another is giving you? A lot of medical centers have something called a patient advocate who can go with you to all of your appointments and help coordinate your care.” My father was furious with me for suggesting that. “How dare you question my doctors? If I were to bring somebody else into the room, that would be so disrespectful to the doctors. Who am I to question their care?” I said, “I was misdiagnosed. I could have died. I understand that doctors are human and they make mistakes and I would bring out anyone and everyone who could advocate for me.” Very different approaches.

I had to get comfortable with the fact that his approach was different than mine. That was his right. I said to him, “I want you to do chemo because I want you to be here as long as you can be here. I’m afraid of being without my dad. But I don’t wish that sickness on you. I don’t wish that shame that you think you’re going to have. I don’t want any of that for you and you get to make the choice.”

Reflections

What inspired you to write your book?
Sarah was inspired to write a book that helped the newly diagnosed understand their diagnosis

I originally set out to write a guidebook for the newly diagnosed because, what I discovered when I was diagnosed, there’s a whole language around cancer that I didn’t know or understand. Once you’re in the cancer ecosystem, you get it. But there’s such a steep learning curve, so I originally wrote a guidebook for the newly diagnosed. 

When I tried to get it published, I was told, “No one will ever read a guidebook by a patient. They will only read them from experts and doctors.” I said, “I strongly disagree, but I guess you’re in the publishing industry.” They said, “You have a good voice. You should write a memoir.” I said, “That sounds arrogant and self-absorbed, and I hope I am neither of those things, but let me lean into that.” 

I wanted to write a book for people who had cancer and were having trouble articulating what it is like to have cancer. I hoped that they would read the stories, see themselves and their experience and they could share it with the people they love and work with and say, “This says what I can’t say.” That’s what I hoped and that is the feedback I am getting. I am so grateful. I have a number of current cancer patients who have reached out and said, “Thank you. I feel a little less alone. I feel like, in the dark tunnel of cancer, maybe there’s some light.”

It is a love letter to people who have cancer, and it can also be a love letter to friends, family, and co-workers. I’ve had people say to me, “My mother and my best friend both died of cancer. Had I read your book, I would have shown up differently.” Those are the reasons I wrote the book. 

The importance of talking about cancer

It’s really hard to talk about it. But we can do hard things and we need to practice having those hard conversations so that we become more practiced and more relaxed. So we can actually show up for one another and help people feel a little less alone.

Sarah recognizes that talking about cancer is hard, but we need to support cancer patients

I would be remiss if I didn’t remind your audience that the American Cancer Society tells us that 1 in 3 women will be diagnosed with cancer during her lifetime. For men, it’s 1 in 2. So it’s not a matter of if you will know someone with cancer, it’s a matter of when. 

Now I am using my book to get people to talk about cancer. I’m talking at a lot of corporations and a lot of medical conferences. I tell the audience who says, “I don’t know someone who has cancer” or “I don’t know how to talk to someone who has cancer.” I say, “It’s really hard to talk about it. But we can do hard things and we need to practice having those hard conversations so that we become more practiced and more relaxed. So we can actually show up for one another and help people feel a little less alone.” That’s my message when I am on the corporate speaking track.

Keeping humor in conversations about cancer 

My mom’s book group refused to read it because they said, “We don’t want to read a cancer book.” I do make it funny because there’s some ridiculous stuff that goes on and you have to laugh about it. I had a number of people say, “Oh my God, you had me laughing and crying at the same time.” I said, “Awesome!” You have to laugh in order to get through. 

In my blog, I turned to humor while I was going through cancer. In the for-profit world and the not-for-profit world, we set up key performance indicators that we hold ourselves to. So I set up key performance indicators for my cancer treatment, and I would report to the audience every time I did a blog, sharing with them how I was doing on my KPIs. That’s my kind of humor, and if that’s not funny to you, don’t read the book.

What’s your biggest advice for cancer patients?
Sarah encourages everyone to talk about cancer

Stop whispering about cancer. Let’s talk about it in full voice. Let’s all practice so we can show up for one another.

We hit on some of my biggest insights, which were, you got to be your own best advocate, take care of yourself in this, and ask for help. The most important things are the people in our lives, our relationships. 

The biggest thing that I want to shout from the mountaintops is, we’ve got to stop talking about cancer in a whisper like, she has cancer. We need to talk about it in full voice. People say, “I don’t want to talk about it because it’s scary and I’ll give power to cancer.” But by keeping it in the shadows, that’s where we give it power. 

I have found now that I’m less afraid to talk about cancer. I’m less afraid to talk about mortality. I’m able to talk with people who are in crisis in other ways because all I’m doing is asking the question that is in the mind of the person going through the crisis, and I’m able to hold space for people that way. So my encouragement is to stop whispering about cancer. Let’s talk about it in full voice. Let’s all practice so we can show up for one another.

Where can people purchase your book?

It’s on Amazon, but you can go to your local bookstore and order it. I always love to give a little plug for Book Passage. It’s a San Francisco-based independent bookstore, and that’s where I buy all of my books.

Where can people find you?

At TheCancerChannelBook.com. If they wanted to email me, I’m sarah@thecancerchannelbook.com. You can go to my website, you can read about the book, you can read excerpts, and you can listen to me reading excerpts.

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Categories
AC-T Adriamycin (doxorubicin) Breast Cancer Cancers Chemotherapy Cytoxan (cyclophosphamide) Lumpectomy Radiation Therapy Surgery Taxol (paclitaxel)

Christine’s Stage 3 Triple-Positive Breast Cancer Story

Christine E. feature profile

Christine’s Stage 3 Triple-Positive Breast Cancer Story

Christine E. feature profile

Interviewed by:

Alexis Moberger

While in her early 30s, Christine discovered a lump under her left arm and breast area, eventually leading to a stage 3 triple-positive breast cancer diagnosis. Committed to her healing journey, she embarked on a comprehensive treatment plan that included chemotherapy, radiation therapy, and a lumpectomy procedure.

Throughout her breast cancer experience, Christine faced challenging decisions regarding family planning, seeking guidance from her dedicated healthcare team. She drew strength from the support of her loved ones, finding comfort in their presence and encouragement.

Christine faced the difficult decision of preserving her fertility before starting cancer treatment. Learning that chemotherapy could potentially render her infertile, she opted for embryo freezing to safeguard her chances of having children in the future.

Despite the emotional challenges and time constraints, Christine underwent the fertility treatment process and successfully obtained two healthy embryos. She insisted on completing the embryo transfers before starting chemotherapy, balancing the urgency of her cancer treatment. Within a month, she underwent fertility treatments and began chemotherapy, demonstrating remarkable resilience and determination.

Transitioning from fertility preservation to treatment, Christine embarked on a five-month journey to combat her breast cancer. Her treatment plan consisted of AC-T chemotherapy followed by paclitaxel. Initially hesitant about chemotherapy, she underwent a powerful shift in perspective, viewing it as essential for her survival.

In parallel with conventional treatment, Christine also incorporated integrative therapy for additional support. Despite the challenges of hair loss and physical side effects, she showed remarkable resilience, facing the mental and emotional struggle of redefining her identity and embracing her new path toward healing.

In addition to Christine’s narrative, The Patient Story offers a diverse collection of breast cancer stories. These empowering stories provide real-life experiences valuable insights and perspectives on symptoms, diagnosis, and treatment options for cancer.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

  • Name: Christine E.
  • Diagnosis:
    • Breast Cancer
  • Staging: 3
  • Initial Symptoms:
    • Lump in her left breast
  • Treatment:
    • Chemotherapy: AC-T (doxorubicin, cyclophosphamide, paclitaxel)
    • Lumpectomy
    • Radiation
Christine E.
Christine E. timeline
Christine E. timeline
Table of Contents
  1. Introduction
  2. Pre-diagnosis
  3. Diagnosis
  4. Fertility preservation before cancer treatment
  5. Treatment
  6. Surgery
  7. Survivorship
  8. Words of advice

As difficult and ugly as cancer was, there was still so much beauty. And what that beauty was is that I’ve become 100% present in my life.

Introduction

I’m married to a wonderful man. We don’t have children yet. We live in a small town just outside of our largest city in Saskatchewan. It’s very peaceful here.

We love to walk. We love to get together with friends. We’re really social.

The rest of the time, I’m working. I work at home. I’m currently working with cancer survivors.

Christine E. with husband
Christine E. with husband
Christine E. with husband
Christine E. with husband

Pre-diagnosis

Initial symptoms

I was feeling quite tired, stressed, [and] pale. I was told by quite a few people that I looked quite pale. I just chalked it up to the stress of COVID and being at home. I didn’t really think much of it, to be honest. But I did find my anxiety was rising and didn’t feel very well overall.

When I was laying on my side, I noticed that the tissue in my breast had been pulled straight while the rest of the tissue was falling to the side. That was really [the] only major tip-off that told me that there was something wrong.

You could see a very distinct divot in that spot. Instantly, I felt my breast and realized that there was a very large, very hard, very stationary lump.

I wasn’t doing self-breast checks. Of course, we should be doing them, but I was so young that I thought, There was no reason for me to do this.

Reaction to feeling a lump on the breast

As soon as I felt the lump, I knew that it wasn’t benign. It was too large. It was too hard. It was too stationary. I knew nothing about cancer because of my age. I had never researched it or thought about it, but I just knew that it was cancer.

I’m up all night trying not to worry my husband. I’m staring at the ceiling, crying, and just thinking, What’s my husband’s life going to be like without me? How am I going to say goodbye to my parents? What’s going to happen here? These dark thoughts really intruded my mind for eight hours. I didn’t sleep a wink.

Family history of cancer

There [are] varying degrees of cancer in my family. We had one with stomach cancer. My great-great aunt had breast cancer. Nothing to really tip us off that a 31-year-old should be watching for it.

Appointment with the family doctor

The next morning, I got to work right away. I got a hold of my family doctor and said, “Something isn’t right.” She was able to get me in just a few days later.

She really put my mind at ease. She said, “This probably is just a cyst with your age. It’s probably nothing,” so I felt okay, but she said, “We’ll give you an ultrasound and a mammogram just in case.”

Christine E. group
Christine E. in the hospital
Breast ultrasound and mammogram

Two days later, I was there for the mammogram and ultrasound. The tech started off with the ultrasound and said, “We need to do a mammogram.” 

We did the mammogram. The tech came in and in a very somber voice, he said, “This isn’t benign,” and that’s really all he could say.

I remember the whole room zoning in on his mouth. I could see him speaking. Everything went fuzzy. I felt out of [my] body at that moment. I don’t recall what he said after, “It isn’t benign.”

I’m grateful that she decided to go forward with these tests. I really was very fortunate.

Diagnosis

Biopsy

After that, I was sent for a biopsy. I met with the breast health center very quickly. We decided to do a needle biopsy of the axilla as well as the breast. They took samples from each spot.

I met with the surgeon and my husband came with me. However, because of COVID, he wasn’t allowed in so that was heartbreaking. He was sitting in the car.

I’m being told by the surgeon that this biopsy is truly just for protocol purposes, that we can discuss my treatment plan, [and] how long I’ll be in chemo without having any MRIs or biopsies coming back. He knows for certain that this is cancer because of [its] size.

He wasn’t able to give me an exact staging, but he did say, “I do not believe this is an early stage.” I, of course, burst into tears. I’m by myself and I’m told that this isn’t early.

Next, I asked, “How long do I have?” You don’t know how cancer works until you’re faced with it. He stopped and said, “Oh, breast cancer is curable. You’re going to be fine.” I was like, “Oh my God, really? Oh, thank God.” That was really a positive moment.

I was very fortunate. I had a very kind surgeon who really was trying his best for us and for our family.

Christine E.
Christine E. with husband
Getting the test results

The biopsy was taken with an MRI the next day. The MRI took about two weeks to come in and the biopsy took about three/four weeks so you can imagine that period of time was absolute torture.

We’ve got all these blood tests, MRIs, biopsies, waiting, unsureness, and everything. Telling your family that you don’t really know what’s wrong, but something’s bad.

The MRI results came back as a stage 3 breast cancer tumor coming in at nearly 8 cm with at least two lymph nodes involved from what they could see from the scan, [with a] suspicion of four.

Reaction to the test results

I was unaware of what all of that meant. I spent a disgusting amount of time on Google learning what BI-RADS means, what stage 3 means, do people survive that, and all these types of things.

I did feel somewhat left in the dark in that way. The doctors were doing their best. They were moving as quickly as they could, but they were forgetting to tell me what it means.

Christine E. with husband
Christine E.

Fertility preservation before cancer treatment

He mentioned fertility [and] the potential loss of both breasts or the nipple. Those things were really traumatic, but he just kept saying, “Let’s wait and see. Let’s see what we can do for you. We’re going to do our very best.” I was really grateful for that kindness and humanness.

We needed to do treatment. But like many 31-year-olds, I waited and intended to have children at about 31. We were in the beginning stages of trying. My husband and I were unsuccessful. Looking back, thank goodness that we were unsuccessful at that point.

When this came up, he asked, “Do you have [the] intention of having children?” I said, “Yes, I do. We were, in fact, actively trying.” He said, “Okay, chemotherapy often renders you infertile.” That was probably the biggest blow.

My husband and I were meant for children. We put all of our time in our 20s traveling, experiencing, and being with friends. We were finally ready so that was a big blow.

I asked, “What are my options?” He said that a lot of people will do embryo freezing so they’ll take your current eggs, freeze them in the embryonic state, and then should you survive this and should there be no further damage, you should be able to have those babies in the future. That would be the eggs of a 31-year-old.

Because it takes time to be able to try again, we launched straight into that.

Christine E. with husband
Christine E. medications
Talking about fertility preservation options with your spouse

We were very comfortable [doing] that right away. It was a do-or-die sort of situation. We knew that we had a choice. Do we want to try to have our own babies? The answer was yes.

I was a little leery of the process because there’s estrogen involved. I had estrogen-positive cancer, but nothing was going to stand between me and my future babies. The decision was made and we decided to move forward with it.

Talking with my husband was difficult. We both really wanted to just live normally. We didn’t want to be facing cancer. We wanted to be having babies with our friends and with our families.

My friends and families are living their lives. They’re starting their careers. They’re having babies. And I’m facing this. It did feel unfair to both of us. It was a difficult conversation.

Fertility treatment process

There [are] daily medications, daily needles, lots of blood work, which I’m historically quite scared of because I have really difficult veins so that wasn’t fun, and lots and lots of appointments.

It’s a very heavy-duty time when you’re going through fertility treatments and you add in the stress of [a] stage 3 diagnosis.

It feels like a distant memory thinking back to it now because it was just so full-on for two weeks that I don’t know how I hacked that.

We have extraordinary strength inside of us that gets pulled out in periods like this. I don’t know how I got through, but we did, one step at a time.

We got to the point where I had lots of eggs. They were strained and I assume it’s because of stress. We were able to combine them and successfully come out with two healthy embryos.

One of the advantages of having later-stage cancer is that things happen quickly. A few doctors pushed back on me going through the fertility treatments. They said, “You need to get in now.”

I was so firm that I was going to finish these embryo transfers before I begin so it postponed the whole process by two and a half weeks. A few doctors were quite concerned about that, but the moment I was ready, they were ready and we moved forward.

From the time I was officially diagnosed to the time that I started chemotherapy was approximately a month’s time. That was getting the doctors in place, getting the oncologists in place, doing all of the fertility treatments, and then actually entering into the chemotherapy stage of my treatment.

Christine E. injectable medication
Christine E. treatment
Christine E. treatment
Christine E. treatment
Christine E. treatment

Treatment

AC-T chemotherapy

I did two months of heavy-duty chemo called AC-T, which is doxorubicin and cyclophosphamide. We did that for four rounds and then we did 12 rounds of paclitaxel every week. Altogether, it was a five-month treatment plan.

Reframing personal view of chemotherapy

It was difficult for me to wrap my brain around [it]. You don’t know until you’re faced with it.

I truly believed if I was diagnosed [with] cancer, I would never touch poison with a 10-foot pole. I would leave, go someplace where I never ate sugar again, live with the monks, and heal myself. That’s what I believed that I would do.

Now you’re facing this diagnosis and the doctor says to you, “If you do what I tell you, you’ll live. But if you don’t, you’ll die.” That was such a paradigm shift for me.

I had a difficult time feeling that this was the best way. I tried my very best to reframe what I had previously said was poison. I tried to reframe it as medicine. I did lots of meditation because that spoke to me and that’s really who I am as a person.

Integrative therapy in conjunction with chemotherapy

I decided to do integrative therapy. I did a naturopathic version of cancer care in conjunction with my cancer therapies because, for me, that was how I could see this as something valuable.

Whether or not it’s for anyone is up to them. But I spoke with my oncology team and we decided that because of the way that I feel as a naturalistic person, this was going to be the best way for my mental health.

The first conversation I had with my naturopath was saying, “I hate chemo. I don’t want anything to do with it. I just want to do naturopathic, but I’m scared.”

Because it was COVID, we had to talk on the phone. It was beautiful because, on the other side of the conversation, she said that their clinic believes in an integrative approach. They believe that you should throw everything at it and they are not against chemotherapy.

Hearing that from a naturalistic doctor was so encouraging. I really think it’s what transferred me from a non-believer of chemotherapy to a believer because someone who I respected said, “Hey, this is a good thing.”

Christine E.
Christine E.
The experience of going through chemotherapy

Undergoing chemo was difficult, but there were breaks and I really appreciated that. You’d go in, have this really difficult experience for days, and then have a little bit of a break and a piece of normalcy. That really helped me a lot.

Between chemo, radiation, and surgery, the most difficult part of my journey was chemotherapy. The combination of losing your hair, puffing up because of steroids, [and] gaining weight because of the steroids really robs you of this femininity that we as females attach to.

Side effects of chemotherapy

One of the more difficult parts of my journey was [the] loss of hair, which is crazy but also not crazy because [as] women, we identify with that. I would say it felt lonely, it felt difficult at times, and no one could truly understand how hard this was for me mentally.

They could see that I was physically ill, nauseous, and tired. They could see that I looked pale. No one could truly tell what was more difficult, which was breaking down paradigms — fear of poison, fear of losing my hair, fear of long-term side effects, and who I really was now. That was probably the harder part.

Christine E.
Christine E.
Mental health support

Some really big things for me were my naturopathic appointments. I loved speaking to an oncological naturopath. Those 45-minute sessions where they explained everything back to front really helped me to understand what these were.

The doctors just don’t have time. They’re overrun, especially in Canada. They have 15-minute appointments and they have to get to the next thing.

When I was able to have those 45-minute appointments where they would speak to me about every nook and cranny, that really empowered me. That really made a big, big difference during that process.

Surgery

We finished chemotherapy after five months and then we took a one-month break in preparation for a lumpectomy.

I had a very extraordinary result; that was the term my oncologist used. My tumor shrunk from nearly 8 cm down to 1.2 cm so we were thrilled. We were so pumped.

We were able to make the decision for [a] lumpectomy as opposed to a mastectomy because that is what I wanted.

Christine E.
Christine E.

I had done a lot of research on the differences between mastectomy and lumpectomy, whether or not it is more helpful, and the grief stage that a lot of women go through in the loss of their breasts.

I already lost my hair and body size, and I knew the grief that that was giving me so I opted for a lumpectomy because I wasn’t willing to add that on.

Lumpectomy vs. mastectomy

A mastectomy, whether unilateral or bilateral, is where you remove one or both of your breasts. All of the tissue is removed. Some people get reconstruction. They’ll have expanders. There [are] different ways that people can re-enhance their chest again.

The difficult part is no nipples present unless they opt for that surgery. There can also be a loss of sensation, loss of equilibrium, [and] things like that.

It’s up to the woman what feels right for her. I don’t discourage a mastectomy [from] anybody who decides that that’s what’s right for them. But I opted for the lumpectomy because the lumpectomy was removing just the tumor.

In my case, I was lucky. I didn’t have to nick or disturb the nipples in any way. I was able to just remove the tumor. Because it was only 1.2 cm, I was left with a very small divot, which filled in with fat over [the] years. I have a very large scar, but I still have my breasts exactly as they are.

Preparing for the lumpectomy

Because of my naturopath, I had lots of preparation. I did lots of protein before. There [were] lots of supplements that were meant to help with pain, with not disturbing the cancer cells and having them spread to different parts of the body.

I also did a lot of meditations to help calm my nervous system and to help [me] believe that this was going to be a smooth transition. Of course, I had my fantastic surgeon who just had the most wonderful bedside manner and was so nurturing. I was feeling quite confident going into that surgery.

Survivorship

I do feel that there are times I’m still processing and this is three years from my diagnosis.

I had a difficult time with burns from my radiation [and] scarring from my surgeries, but the really difficult thing was the weight gain. That was so hard. It really felt like salt in the wound.

A lot of trauma around how quick the whole process was. The very definition of trauma is too much, too fast and that’s really what happened. I believe that I sustained post-traumatic stress from all that happened.

Christine E. in the hospital
Christine E. group
Christine E. group
Christine E. group
Christine E. with husband

It was interesting. While I was in the process, I felt like, “I can do this.” I felt almost invigorated in a lot of ways and very positive.

But afterward, in the survivorship role, I found myself very low, very disconnected from myself and my body. I felt depressed really in a lot of ways. All of that trauma came flooding back. I didn’t expect it, but mentally, the survivorship stage was more difficult than the journey itself mentally.

Words of advice

When you’re choosing your treatment path, it truly is a difficult road. You need to be able to persevere from what you feel is right for you because it’s going to be hard.

If you align your treatment plan in a way that speaks to you, you can always draw from that and say, “I’m doing my best with what I know.” On those difficult moments, you have something to look back on and say, “I was true to me.”

Cancer teaches you a few things. It teaches you how to be self-compassionate because you have to be. It teaches you how to ask and allow people to help you because you have to.

It can be the beginning of something beautiful. I know that, for me, as difficult and ugly as cancer was, there was still so much beauty. And what that beauty was is that I’ve become 100% present in my life.

I don’t fear anything anymore because I know what fear really looks like. I’ve become completely unapologetic about who I am and what I need.

Cancer is not inherently a blessing, but I believe that you can make a choice to make this trauma mean something to you and bring you into the type of person that you’ve always wanted to be.

While still very much in her cancer journey, Christine was shocked to get diagnosed with a second cancer. She shares her story of finding out she had stage 2 lung cancer.

Read Christine’s stage 2 lung cancer story here »

Christine E. feature profile
Thank you for sharing your story, Christine!

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Amelia

Amelia L., IDC, Stage 1, ER/PR+, HER2-



Symptom: Lump found during self breast exam

Treatments: TC chemotherapy; lumpectomy, double mastectomy, reconstruction; Tamoxifen

Rachel Y., IDC, Stage 1B



Symptoms: None; caught by delayed mammogram

Treatments: Double mastectomy, neoadjuvant chemotherapy, hormone therapy Tamoxifen
Rach smiling against fall leaves

Rach D., IDC, Stage 2, Triple Positive



Symptom: Lump in right breast

Treatments: Neoadjuvant chemotherapy, double mastectomy, targeted therapy, hormone therapy
Caitlin

Caitlin J., IDC, Stage 2B, ER/PR+



Symptom: Lump found on breast

Treatments: Lumpectomy, AC/T chemotherapy, radiation, hormone therapy (Lupron & Anastrozole)

Joy R., IDC, Stage 2, Triple Negative



Symptom: Lump in breast

Treatments: Chemotherapy, double mastectomy, hysterectomy
Categories
AC-T Adriamycin (doxorubicin) Breast Cancer Cancers Chemotherapy Cytoxan (cyclophosphamide) Invasive Ductal Carcinoma Mastectomy Radiation Therapy Surgery Taxol (paclitaxel)

Bethany’s Stage 2 ER+ Breast Cancer Story

Bethany W. feature profile

Bethany’s Stage 2 ER+ Breast Cancer Story

Bethany W. feature profile

When Bethany was in her late 20s, she used to find lumps in her breasts that turned out to be either swollen lymph nodes or cysts and would eventually go away. But when she was 33, she neglected to get one lump checked and it turned out to be cancer.

She shares her journey of how she went from not believing in medicine to blending the natural healing world with Western medicine and how the fear of recurrence pushed her to make big life changes.

  • Name: Bethany W.
  • Diagnosis:
    • Breast Cancer
    • ER+
  • Staging: 2
  • Initial Symptoms:
    • Lump in breast and armpit
  • Treatment:
    • Adriamycin (Doxorubicin)
    • Cytoxan (Cyclophosphamide)
    • Taxol (Paclitaxel)
    • Double mastectomy
    • Radiation

Here I am studying all these ways to be present, to be mindful, to embrace life, to learn, [and] to grow. What if that’s cancer? What if cancer is something that can be a teacher in some way and even improve my life or maybe help me appreciate life more?

Bethany W. holding book
Bethany W. timeline
Table of Contents
  1. Pre-diagnosis
  2. Diagnosis
  3. Treatment
  4. Remission

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Pre-diagnosis

Tell us about yourself

I live in a small town just outside of Boulder, Colorado. I’m pretty obsessed with nature and adventure. Colorado just offers so many options for that. I’m so excited [about] ski season, hiking, nature walks, kayaking, [and] paddleboarding. It’s a new life for me out here. I’ve been here [since 2019]. I love anything outdoors. I love movement. I love life and the people in it.

I enjoy whatever is in front of me, whether it’s [a] delicious cup of coffee and chatting or sitting in the infusion chair for treatment.

[I’m] a lover of life and an inquisitive person as well, someone who challenges traditional belief systems, ways of living, or ways of looking at things. I get a little extra excited when someone’s like, “Oh, this is the only way.” I’m like, “Hmmm. Really? Okay, well, maybe we can challenge that a bit and see how there are just so many ways to live life, to enjoy life, to heal, [and] to be with people.”

I was [previously] in Texas. I was in Dallas and a little bit in Austin. Before that, I grew up in Florida. Florida, Texas, [and] Colorado are my three main homes.

Bethany W. outdoors with dog
Bethany W. aerial yoga
When did you start to feel something may be off?

I found [the] first lump in my late 20s. At that time, I had a career as a yoga therapist, worked in wellness for many years, studied mindfulness and ate organic. I consider myself a really healthy person. I have no family history of cancer. But I did find a lump in my breast [so] I went and got it checked out. It was just a swollen lymph node or a cyst and it went away. I had very dense breast tissue. I had maybe four or five of those.

The first one [was] very scary. I didn’t realize there could be lumps that weren’t cancer. When you have dense breast tissue, it means it’s lumpy. Over time, those lumps would change and work themselves out so I learned how to monitor them, take them in and I felt I [had] a pretty good rhythm.

Fast forward to 33 [years old]. I found another one and decided not to get this one taken in and checked out. By that time, I already had enough of them and it’s always turned out to be nothing. I [didn’t] feel like going through that [whole] ordeal. I didn’t have health insurance at the time either. I was paying out of pocket for anything doctor related. I wasn’t very motivated to get that one checked out.

I first found the lump [in] November 2014. Over time, I noticed that it did start to grow. I talked myself out of it. I told myself that it was possibly a fibroadenoma. It’s just another swollen cyst. I’m so healthy. I don’t have a family history.

It wasn’t until the following summer [that] I felt another lump in my armpit and I’m like, Hmmm, that’s different. I had a really good girlfriend who was also a yoga teacher. Very healthy, lives a healthy lifestyle, has a great attitude about life, and she was diagnosed with a really aggressive form of sarcoma — stage 4 right off the bat — and it started as a pain in her hamstring, which she just thought was something from yoga. When she got diagnosed, that was definitely the wake-up call of, “Hey, you’re not immune to this. Young bodies get cancer.” I didn’t know much about it. I didn’t know many people. That really prompted me to get things checked out.

How much time had passed before you had the lump checked?

It was about eight or nine months in between. I found that lump, didn’t take it in, and then finally I did.

I considered myself a natural person. I would use nature to heal. Medicine was something I didn’t believe in at the time and [I would think to myself], “Oh, even if it was something serious, I wouldn’t use Western medicine to heal me. Are you kidding? That’s Big Pharma and I had all these beliefs about it.”

Getting the initial scans via thermography

When I did decide to get that lump checked out, I actually went for thermography. I was with a naturopath. I was in Texas at the time and had used it in conjunction with ultrasounds prior to that time. The results matched always. I was told with thermography that “there’s no radiation so it’s healthier for your body. It detects cancer six years earlier than mammograms.” It was just toted as kind of the better, healthier way to detect what’s going on in your breast tissue.

Those scans showed no signs of cancer in my breast or in the armpit so I was elated. The doctor gave me some homeopathic remedies, some other treatment options [to] flush my lymphatic system, and cleansing.

But in my time working with him, the lump started getting bigger in a matter of weeks. I asked him, “Are you sure I shouldn’t maybe get a mammogram? I don’t know. This feels weird.” We repeated [the] thermography scans two more times. Again, no signs of cancer.

Bethany W. hospital gown

You are not too young [or] too healthy to get cancer. It can happen to anybody.

Bethany W. diagnostic testing period
Finally getting an ultrasound and mammogram

I still felt off. Finally, I was like, “I think I need an ultrasound or a mammogram.” And he said, “Okay, but just remember that mammograms cause cancer.” That’s a big story out there that prevents a lot of women from just going to a doctor and getting things checked out. I said, “Screw that. Maybe. I don’t know, but I have some big lumps here and I need to know what these are.”

I’m so happy I listened to that inner voice. I would have loved to turn her on nine months before when I first felt the lump, which is a big part of why I tell my story now. You are not too young [or] too healthy to get cancer. It can happen to anybody. Cancer loves bodies. It is just looking for a place to grow and thrive.

I did go the route of an ultrasound and a mammogram, which showed very suspicious activity. By that point, the lumps were protruding. You could see it coming out [of] my breast. A biopsy is what confirmed it.

What was that moment when you said you needed to see what this is?

I was driving home from my third or fourth appointment with the naturopath and I expressed my concern one last time. “I don’t know. I don’t feel comfortable with this.” His answer: mammograms cause cancer. I did respond, “I already have the lumps. Do you think they’re going to magically turn into cancer if I get my first mammogram? Do you think that that’s the case?” He [got] startled and [said], “Well, you do what you need to do.” I’m like, “I am.”

I actually kind of stormed out of that office, got in the car, and got my mom on the phone. My mom has a background in nursing. The whole time she’s like, “Go to the doctor. Who is this guy? Seems like a quack. Go to a doctor.”

I also felt really lost at that time, too. I knew I wanted one. I had no idea how. Here I am, I’m 33. I don’t have health insurance. I feel like an idiot. I’m beating myself up about not having health insurance in this situation. This was [at] the beginning of Obamacare. Health insurance for someone who is self-employed was so expensive. It was half my income for the month and I just couldn’t afford it.

Luckily, my husband at the time, his mother worked in a doctor’s office in Dallas. I reached out to her and I’m like, “Is there anything you can do to help? I need to get these lumps explored.” I’m so, so, so lucky because she just jumped right in. She got me [an] appointment with her PCP. I qualified for a charity grant for a mammogram and ultrasound.

Now, did I think it was cancer? No, but I wanted to rule it out. I need to know what this is just for my own peace of mind.

Luckily, with the Affordable Care Act, I was able to get health insurance in the middle of the year because I had just moved so I qualified for special enrollment. It was just this magical thing all coming together.

Bethany W. blood extraction

It really started dawning on me: Oh my god, this could be cancer. What if this is cancer?

Getting the biopsy

My insurance hadn’t kicked in yet. I could have waited a few weeks to get the biopsy, but I got a quote for it. I think it was $825 or something. Cue naivety. I thought, I can do that. That’s worth my peace of mind right now, honestly. I’ve just been in this already for weeks and I just need to know what this is.

Bethany W. yoga
Dealing with “scanxiety”

At that point, I just got trained in this mindfulness practice of inquiry called The Work of Byron Katie so I have all these tools for dealing with stress. That’s literally my career at that time. During the diagnostic phase, when I still couldn’t figure things out, it really started dawning on me: Oh my god, this could be cancer. What if this is cancer?

I completely spiraled downhill. My mind was full of worst-case scenarios and all I could think was I have cancer. My life is over. All my dreams are done. My relationships are over. This is going to absolutely crush my family. I couldn’t see any kind of good or positive outcome in this situation.

I was just torturing myself for not getting things checked out sooner. Thoughts like, It’s my fault. I did something wrong to create this in some way. Obviously, I wasn’t healthy enough or good enough or a good enough person. I had all this self-blame going on and with my mind full of all of those beliefs, all those emotions, I just spiraled down and didn’t want to leave my bed. I was depressed. I was lashing out at people that were trying to help me. I’m like, “You don’t understand. You don’t know what this is like.” It felt so lonely.

I knew the mammogram and ultrasound were suspicious. I had a biopsy scheduled. The interesting part now is that that time period was so important to me and my journey because I really got to see the cause of [my] suffering and the cause of my pain [at] that moment because I had no idea if it was cancer.

Cancer could not have been the problem [at] that moment. We didn’t even know if it was real or not. But what was real was everything that was going on in my mind. My mind was full of it — not of cancer [but] just worst-case futures. I believed them and I went downhill.

I hit this moment where I was like, “Enough! This is enough! I can’t do this anymore.” I hit a level of suffering where it was just, “I have to try something else.” That moment,  just like that inspiring moment to go get a mammogram, that inner voice kicked in again and it’s like, “Girl, you have tools for this. Let’s go back to them.”

I reached [into] my little healing toolbox and pulled out The Work of Byron Katie, which was the practice that I was just certified in. It’s a way to take those thoughts [and] get them all out of the mind. Write them down on paper. Beliefs like, “My life is over. Cancer will ruin everything. I’ll die young.”

I just started writing. Writing, writing, writing. Then I started questioning those beliefs and asking myself: “Is it true that my life is over? Can I really know for sure?” I’m like, “I can’t know for sure. It feels that way, but I don’t know. I don’t even know if it is cancer. Even if it is cancer, does that mean my life is over right away? I don’t know [the] cancer world well. Actually, there are people that are still around that have been diagnosed.”

Bethany W. aerial yoga
Bethany W. close up

Then another question of that process is, “How do you react when you believe that your life is over?” And that’s the depression, that’s spiraling down, that’s the lack of motivation to even take a walk around the block or eat [healthily]. I wasn’t motivated to do anything and [was] angry, rageful, and just lost.

Then I asked myself the final question of that process: “Who would I be in this same situation?” I have a biopsy scheduled at that point. Who am I in this situation? I don’t know what it is, but who am I without the thought my life is over? I had to sit and meditate in that space for a bit. Another thought would come in. I’m like, “Put out that thought. Who am I without that thought?” It slowed down my mind enough to come back to reality.

[At] that moment, [the] reality was there’s no proof there’s cancer at that moment. I have the next step, which is the biopsy scheduled. How grateful I am that I’m able to do that. I’m breathing. I actually felt really good physically without the thoughts. I have more energy. I’m not so tense. I’m seeing I have a lot of support around me.

Then I move into turning these thoughts around — My life is over → My life isn’t over — and looking for some examples of that. In reality, I’m alive. I’m speaking. I’m looking at this body. I’m moving. I’m breathing. I’m eating. I’m digesting, I’m showering. I’m alive. My life is not over. It’s happening right now. Then I started to look at even if it was cancer, how could it be true that my life isn’t over, you know? Or maybe my life is just beginning?

I started entertaining this possibility of, “Let’s play with this worst-case scenario, and how could that even be good.” I sat in that question, journaling, writing, and some really neat answers came out. I was like, “You know what? This could be a really amazing adventure. Here I am studying all these ways to be present, to be mindful, to embrace life, to learn, [and] to grow. What if that’s cancer? What if cancer is something that can be a teacher in some way and even improve my life or maybe help me appreciate life more?” That was already starting to happen.

Going in for the biopsy

When I went in for the biopsy, the nurse, her name was Joy and I just thought it was perfect. She was so sweet. I watched her walk me through all the details, put on the cozy socks, and she had a warm blanket for me. I’m just like, “Wow, there’s so much kindness here.”

The doctors came in. They explained everything and held up the giant needles that were going to be going [into] my body. They’re like, “Do you want to watch the procedure on the screen?” I was like, “Hell, no. Please put something over my eyes and thank you.”

I was really mindful through all of it and it was kind of fun. I talked with everyone and I was grateful that it was happening because these tests are what’s going to tell me what’s going on in my body. Therefore, I can know, stop living in that land of the unknown, and then know how to deal with it.

Bethany W. smile

Diagnosis

Official diagnosis

The official diagnosis of breast cancer was September 16, 2015. I had done a full body PET scan [and] brain MRI just to confirm it hadn’t spread to other places. Getting those results that it hadn’t was very nice to hear. Very relieving.

I had hormone-positive cancer, ER-positive. It loved estrogen. My body was really good at making it in my young 30s.

Bethany W. treatment
What was your reaction to the diagnosis?

By the time I heard those words, “You have cancer,” it was a few weeks after my 34th birthday. I was at home sitting on the couch, watching TV. I had known the results could come in any time. While I say I could find peace with cancer, I was still stalking my phone like crazy. I remember thinking, Should I get a car wash? Eh, no, I’ll just stay. I’ll just stay here.

My husband had just come home. I saw the number on the phone. [It] was the PCP’s office and it was just like, “Oh my god. Oh my god. This is it!” [My] heart rate goes up and he’s sitting next to me.

She was so kind. She said, “You know, I wanted to tell you as soon as possible. I know you’ve been waiting on the results and this is the part of my job I really don’t love. This is the hard part of my job.”

They found cancer in both breasts and the lymph node. Hearing those words, it was just like time stopped. I think I could have described every nanosecond. My hand was on the couch, the other one was on the phone. We had our foreheads touching, just leaning over, and we were just frozen.

Then she went on to share, “People get through this. I just had a patient who’s in her late 20s. She made it through. She just had her first baby.” I love that she was being a human on the phone with me and very caring. I still was like, “Are you… Really? Cancer? This is cancer?” It took moments to settle in. I was like, “What?”

We hung up the phone and I looked at my husband. I was like, “What do I do now? What do we do?” Then he just grabbed me, pulled me in, and we just started sobbing. While that was such an intense moment, I felt so much love, too.

I stood up and got really hot. My body started sweating. I had to take my shirt off. I was just pacing. I’m looking down and I’m like, “That’s cancer? What?”

Then it began — meeting with the breast surgeon [and] oncologist, and getting more tests done. My insurance kicked in finally and that biopsy bill turned out to be $8,000 instead of $825.

Bethany W. hospital bed

It was so much all at once. Just the emotions of my life just changed forever. With all the mental practice I was doing, I was trying to stay present with it. “Okay, it’s go time.”

It’s also heart-crushing how quickly your life changes. In my 30s, everyone else is growing careers, growing babies, and I’m growing cancer. I’m just like, “What? What the heck?”

Bethany W. treatment

Treatment

My first chemo was [at] the beginning of October. Within mid-October, I was bald.

They staged it at a late stage 2, early 3. There was a large mass in my breasts, a few little satellite nodules, and my left armpit had a tumor [that’s] 4.8 cm. That was the one that I felt. Some other ones were looking positive as well.

I asked — of course, Miss Natural Me, was very naive — and I’m like, “Oh, so we could just scoop that out in a little surgery and I’ll be cancer-free by the end of the year, right? That’s how this works.” And no, that was not how that worked.

I showed up to the office and again, my breast surgeon — so kind — is looking at me like a human. I know not everybody gets that experience and I was just so grateful. She’s holding my hand. She’s walking me through everything.

We couldn’t do surgery right away. She said, “If we did [the] surgery, it would be very mutilating to your body, especially in the armpit area, because you might lose the use of your arm. With that, I think we should do chemotherapy first with the goal of shrinking everything and then be able to have less invasive surgery.” That sounded like a great plan because I’m like, “I love my arm. I very much would like to use it.” So that was clear.

Then she said, “Five to six months of very aggressive chemotherapy, then surgery, then six weeks of radiation, and then five to 10 years of hormone therapy.” And that’s where I was like, “Are you kidding?” I just looked at her stunned.

I remember her drawing the graphs of how cancer cells multiply and divide in the breast ducts. I just was like, “That’s my body? You’re talking about my body right now? This is so confusing to hear all of this because I feel so healthy. If I didn’t have those lumps, I just felt on top of my health, on top of the world. I felt great.” 

I love this moment. She grabbed my hands, looked me right in the eyes, and said, “You feel healthy because you are healthy.” I was just like, “Dang, you’re awesome.” Because that’s true. You think, “Oh, now I’m a cancer patient and now I’m sick.” No, I’m also a really healthy person. I just happen to have some cancer growing in my body. And that’s a totally different perspective than what we hear out there. Very empowering to hear as well. I am healthy. I am strong. And then you know what? I got this.

Starting chemotherapy

I dove right into that treatment plan. I thought of it in phases. It was too much to wrap my head around everything.

[I got] Adriamycin and Cytoxan, so AC. Four treatments every other week and that’s known as more aggressive, go after it really quickly, so a little bit more intense on the body. Then 12 weeks of Taxol so that took me into finishing in March. There were some times [when] my numbers were too low to be able to continue treatment so I’d have to take a break and come back so it extended it a little bit, which is normal in the process, too.

Bethany W. masked up during chemo
Bethany W. treatment

The stories I heard about chemo [and] what I saw in movies are my reference points of chemo being poison. I actually challenged some of those beliefs, specifically that chemo is poison to my body and that it’s poisonous to me. I found the opposite. Chemo is healing my body when I took it through that process.

You read the side effects, it’s terrifying. Imagine this future of bald, vomiting, gray skin. No quality of life is where my mind was going at first. Then as I started walking through it in inquiry, it was like, “I don’t know if it’s poisonous to me. I’ve never had it. I don’t know how’d my body react. I’m young, healthy, and strong. There’s a lot of complementary natural ways to support side effects and I’m actually pretty excited to learn more about that stuff.”

I started blending the natural healing world with this Western medicine world. [I] also looked at my other beliefs about Western medicine. You hear, “Oh, Big Pharma is only in it for money,” or “Doctors aren’t human. They’re just trying to make you sick.” These were the things I was hearing at the time in the natural world. I laugh at a lot of it now. Maybe that’s true in some cases but I’m looking at my doctors holding my hand, looking me in the eye, and crying with me. That’s a human right here. And you know what? They want what I want: to be cancer-free and live a good life. It doesn’t really look good on them if I’m dying next week. They’d run out of patients really quickly. It was just seeing this other world of medicine.

I became so grateful. It became a privilege. I’m so lucky I have treatment options.

Here’s this thing I’m going through. How can I make it better and more fun? Because whether I like it or not, I’m going through it.

When I went in for chemo, I nicknamed it. I changed the name to see love. I did this for a lot of things. I changed the name to something super cheesy, but it made me feel better.

I’d go and get all plugged in with my port. I’d see the kindness in the nurses. I’d make friends with my neighbors. I’d bring all my movies, coloring books, or whatever to entertain myself and I would have fun. There was this baseline of here’s this thing I’m going through. How can I make it better and more fun? Because whether I like it or not, I’m going through it.

How did you deal with hair loss from chemotherapy?

I loved my hair. My hair and my breasts, I considered my two best assets. I love them. My hair was touching my butt — long, curly mermaid hair — so that was really emotional. I hadn’t had a haircut in forever either so I knew that would be hard.

Bethany W. c-love
Bethany W. hair party
Bethany W. hair party
Bethany W. bald is the new beautiful

I decided to throw a hair party. I had a friend, a yoga client, who had a hair studio. He opened it up on a Sunday. I brought friends and family in and we had champagne and sushi. It was a really fun day and a special moment.

I had so much hair come out. I also was able to donate it. I found an organization that makes wigs for young children who have been affected by cancer. I just thought if I can’t have this hair, the thought of little kids running around playgrounds wearing it just made me smile. So I did that.

I started chemo with a little pixie cut and I really thought that I would bypass any emotions about actually losing my hair. I was like, “Yeah, I got this.”

Day 16 was the morning I actually did. It was exactly when they told me it would be. I started feeling like my scalp was really tender. I woke up at 6 a.m. I looked [at] the pillow and there were clumps of hair. I had heard about that when I was starting to read books. I was like, “Okay. This is it. It’s happening. Okay. Okay. We can do this.”

I leave my husband in bed and I go to the shower. I had read that you could rub it out when it was wet in the shower so I’m rubbing it out more and more. I’m looking at the floor and [there are] clumps. They look like little wet hamsters all over the shower floor. I’m trying to build myself up like, “Okay, okay, you’re good. You’ve got this.”

The steam got to be so intense that I thought I might pass out in the shower so I stumbled out. The moment that I was not prepared for was looking in the mirror. These patches of hair and zigzags. I had no idea who was looking back at me in the mirror.

I lost it, just started screaming. My husband came in and I was just like, “Get it all out now! Get your shaver!” And he’s like, “But my shaver won’t work on heads. It’s only for faces.” And I was like, “Go buy one!” I grabbed scissors. I started cutting this part [in front]. I was a disaster. I can laugh about it now because it’s one of the funniest stories but at the moment, it was so dramatic. Finally, a few hours later, he had gotten the shaver. I charged it and just shaved it all off.

It was so interesting to look at the pain behind being bald [and] eventually, losing my breasts or having my breasts replaced. I did have a double mastectomy. These are what make me a woman and beautiful. Those are my beliefs. I looked at them, like, “Is that really what beauty is?” In reality, I know it’s what I think it is but is it? Can I find it anyway?

I started loving being bald. It’s so freaking easy after having hair down to my butt for years. Warm things like the shower felt so good on my head, like a little scalp massage. All senses were heightened. Then it was fun. I’d walk around really proud. I would go to fancy restaurants in Dallas, totally bald but with a really cute dress on. I was like, “I’m going to own this. Whatever. It’s happening. I’m going to own it.”

Bethany W. shaved head
Bethany W. angel wings

I think I have this pattern of “It’s so hard” right in the beginning, I freak out, and I let myself freak out. Those emotions are natural and they’re meant to flow. Then eventually, I’ll make peace with it and be like, “How can I make this fun? What can we do here?” I took that mindset to each phase of treatment.

Deciding on breast cancer surgery options

After chemo, then the surgery decision. Chemo shrunk my tumors. It was amazing. It was like magic. It shrunk them down to microscopic level. [There were] barely signs of cancer come Christmas that year. 

I had all surgery options — a lumpectomy, a single, or a double. I completely tortured myself [during the] decision-making process because I loved my natural breasts. But, at the same time, I saw that my breasts are very dense. They’re very good at growing lumps. Now, would I have cancer again? I don’t know, but I’d have a lump again and that would mean I’d have to go through ultrasounds, mammograms, and biopsies over and over.

I also had very large breasts for my body. They yanked on my neck and shoulders and I had headaches frequently [so] I was entertaining the idea of what might it feel like to not have [them]. After torturing myself for a long time around the decision, I did choose a double mastectomy for my long-term peace of mind and that felt good for me.

I know it’s always a personal decision. All treatment really is so I don’t judge people. Everyone’s just doing what’s right for them. I’m really happy that I made that decision.

I had my double mastectomy and had tissue expanders put in place. Those are like temporary breasts that go through radiation better than implants. They hold their place better because when you go through radiation, your skin will tighten and shrink.

That surgery was my cancer-free date. They got clear margins. They removed some lymph nodes as well.

Remission

I didn’t hear the news right away. I heard the news in the car with my mom. We were on our way to a park downtown to have lunch. We had just gotten some vegan pizza. The doctor called and [we] pulled over right away. It was funny. She said it in a very sterile voice. She’s like, “The pathology results came back and there is no evidence of disease.” I was like, “I’m sorry, what? What? What are you saying? Are you saying that… Is the cancer gone?”

It was really weird. As soon as I got around, we hung up the phone. We’re sobbing and then we went to the park. [At] that time, I was still healing from surgery. I had drains hidden in a fanny pack underneath my clothes and my breasts were taped up — literally a bra full of tape holding everything together. I’m sitting there at this park in downtown Dallas eating pizza with my mom.

It’s exciting to get that news but, at that point, I still had so much more treatment, too, so you don’t feel cancer-free. I had so much more to come at that point.

Bethany W. hospital bed
Bethany W. CT scan
What was the next step?

I had some complications [during] healing. I had this thing called cording in my armpit that showed up after surgery. It was weird. I did not read it in the very long list of side effects. These strings developed. Literally, they look like piano chords and they would go from [the wrist] all the way down through my armpit to my breast. I couldn’t lift my arm and it really hurt.

When I first brought it to the attention of my breast surgeon, she’s like, “You’re going to physical therapy right away. We have to resolve this before radiation.” Because when you’re in radiation for breast cancer, you have to hold [your arms up] for 10 minutes and be really still. She goes, “First of all, the cords? They don’t really know the cause of it.” They don’t know. They could last forever. They could be gone soon. There could be more. It was just very unknown. Of course, I freaked out about that.

I went into physical therapy and just loved my physical therapist. She was wonderful. It was like private yoga therapy for healing after surgery. I have a background in yoga therapy, but healing from a double mastectomy, I felt really nervous to push my body. This was unfamiliar territory to me. I tell everyone now, “If your insurance covers physical therapy, do it. Don’t wait for a complication.” I didn’t understand why everyone wasn’t just recommended to do it. I felt it was awesome.

I started healing really quickly. She would massage the cords. They would pop and break apart. It was creepy.

By the time I did have radiation, I had full use [of my arms] and range of movement. That took me into the summer. My tissue expanders were getting filled with saline every week and I literally watch my boobs grow a half size. That was hilarious. And painful as well as they would stretch.

I chose to do reconstruction. Some people choose to go flat. I still wanted to have breasts in some way. They stretched the pec muscle over on top of the implant or, at this point, the tissue expanders so it was painful. It was really intense.

They had to blow me up to a certain size before radiation and they had to blow me up [to] a bigger size on the radiation side. [In] the summer of 2016, I had a lefty super boob. It was just huge because it would eventually shrink more. The tissue expanders don’t move at all. It was weird, but it was nice to know they were temporary.

I had radiation that summer. That went great. As expected, your skin does peel and blister. It’s a really intense sunburn. Underneath was this baby butt-soft, brand-new skin that totally healed.

[The radiation] did some weird stuff like pulled [the] breast up and my nipple to the left a bit. Some women have their nipples removed with a double [mastectomy]. I was able to keep mine because there wasn’t any cancer near it. I got the set of googly eyes forever, but that’s okay.

Bethany W. expanders
Bethany W. hospital
Maintenance treatment

After radiation, all the big parts of cancer therapy were over. I got on a hormone pill called Tamoxifen, which is to basically block if there were remaining cancer cells floating around, microscopic ones. It would ideally bind the cancer cell’s mouths closed so [they] couldn’t feed on estrogen. That was a daily pill. That actually went great. It was very easy for me.

There I am just kind of released and they’re like, “See you in three months.” I had to wait about a year for that final reconstruction surgery, which is a big deal but it’s also not really cancer treatment. It’s working with a plastic surgeon.

It was a really interesting moment for me because here I am, physically cancer-free. I made it through the biggest parts of treatment and at first, it was exciting. Elating. Then I just got bombarded with so many emotions again: fear of recurrence.

I’m making friends in [the] cancer world and some of them aren’t here anymore. I’m just seeing these other possibilities. Big emotions were coming up.

That was a big lesson. Caregivers or partners have their own cancer journey, too. And to be honest, I think it’s harder at times.

How did cancer affect your marriage?

I was having a really hard time in my marriage. Cancer was connecting us in the beginning and then it started tearing us apart.

We had different views on healing. He was very much into the natural, alternative world and he saw chemo as poison. He thought it would kill me. He doubted everything the doctor said.

He also wouldn’t get help either. I was begging, “Please go to therapy.” It was about a year and a half into the process [when] he finally said yes.

That was a big lesson. Caregivers or partners have their own cancer journey, too. And to be honest, I think it’s harder at times because we’re all dealing with [the] unknown. Cancer is going to do what it does so that’s out of all of our control. But at least with me, I can be empowered in how I treat my cancer, how I choose to live, [and] how I react to things. I can affect that. But he can’t affect that either so it’s like [a] double loss of control. And of course, what’s underneath all of that is fear of losing me. What happened was he emotionally checked out a bit and I felt very unsupported.

Luckily, my mom, with her nursing background, was flying out. She lives in Florida so she was flying out for all the big parts of treatment. She was amazing. My partner was also amazing but he could not show up for me fully with the treatment part so I was just full of so much grief.

Bethany W. with her mom

I was having a really hard time in my marriage. Cancer was connecting us in the beginning and then it started tearing us apart.

Bethany W. dancing

Here I was, cancer-free. And that birthed my whole philosophy of cancer that being cancer-free, true freedom from cancer, it’s a state of mind. It is not a diagnosis. It’s not a physical condition so I had to find cancer-free again in my life. That involved letting these emotions flow, letting the grief come out, and then questioning [the] thoughts [that] cancer will come back [and] the beliefs about my relationship. 

Making life changes after achieving remission

I made huge changes in my life. I use the fear of cancer coming back in a different way where I don’t have to live in this constant fear.

It was really clear to me that I was done living in Texas. I’d actually been done 12 years earlier and just didn’t [leave] for many different reasons. But I was ready to go.

I had started spending summers in Colorado. I’ve always loved Colorado. I started writing. I wrote [at] the beginning of my journey. I shared my whole journey on a blog and on social media. It felt really good to write and that was very healing for me, so was sharing, and that connected me with so many amazing people in the cancer community as well.

Some answers became clear. I want to write a book about this experience. I want to help others. I could have fun in cancer. And so I did that.

My relationship was not working for me anymore. [In] the summer of 2019, I’m done treatment, in remission, feeling good, and I’m making big changes. I packed all of my belongings into my [car], separated from my partner, and drove to Colorado to start a new life to put [myself] first and see what I really want.

Bethany moves to Colorado to start a new life. There, she begins experiencing lower back pain. After being told that she didn’t need a scan, the pain worsened until she finally insisted on one. A lower back MRI revealed lesions all over her bones. She shares her story of finding out she had metastatic stage 4 breast cancer.

Read Bethany’s metastatic stage 4 breast cancer story here »

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More Invasive Ductal Carcinoma Stories

Amelia

Amelia L., IDC, Stage 1, ER/PR+, HER2-



Symptom: Lump found during self breast exam

Treatments: TC chemotherapy; lumpectomy, double mastectomy, reconstruction; Tamoxifen

Rachel Y., IDC, Stage 1B



Symptoms: None; caught by delayed mammogram

Treatments: Double mastectomy, neoadjuvant chemotherapy, hormone therapy Tamoxifen
Rach smiling against fall leaves

Rach D., IDC, Stage 2, Triple Positive



Symptom: Lump in right breast

Treatments: Neoadjuvant chemotherapy, double mastectomy, targeted therapy, hormone therapy
Caitlin

Caitlin J., IDC, Stage 2B, ER/PR+



Symptom: Lump found on breast

Treatments: Lumpectomy, AC/T chemotherapy, radiation, hormone therapy (Lupron & Anastrozole)

Joy R., IDC, Stage 2, Triple Negative



Symptom: Lump in breast

Treatments: Chemotherapy, double mastectomy, hysterectomy

Categories
Breast Cancer Cancers Invasive Ductal Carcinoma Metastatic

Abigail’s Stage 4 Metastatic Breast Cancer Story

Abigail’s Stage 4 Metastatic Breast Cancer Story

Abigail was a busy lawyer and mom of 2 when she found a lump in her breast. After her first mammogram and a biopsy, she was diagnosed with breast cancer.

What was originally thought to be stage 2A turned out to be stage 4 metastatic, meaning it had spread throughout her body.

Abigail talks about parenting with cancer, the transition from a busy career to going through treatment, patient advocacy, and the exciting breakthroughs in treatment.

Thank you for sharing your story, Abigail!

  • Name: Abigail J.
  • 1st Symptoms:
    • Back and leg pain
    • Lump in left breast
  • Diagnosis (DX):
    • Metastatic breast cancer (MBC)
    • Node negative
    • HER2-low
    • PIK3CA mutation
  • Staging:
    • Initially staged at 2A
    • Stage 4
  • Tests for DX:
    • Mammogram
    • MRI
    • Biopsy
  • Treatment:
    • Lumpectomy
    • Chemotherapy
      • 4 rounds of Adriamycin & Cytoxan
    • Hysterectomy & oophorectomy
    • Ibrance & letrozole (8/17 – 8/19)
    • Piqray & Faslodex (8/19 – 3/20)
    • Piqray, Faslodex & Kisquali (3/20 – 10/21)
    • Verzenio & Faslodex (10/21-1/22)
    • Taxotere & Xeloda (2/22 – 5/22)
    • Xeloda (2/22 – present)
Table Of Contents
  1. 1st Symptoms and Testing
  2. Breast Cancer Diagnosis
  3. Processing Cancer and Finding Community
  4. Undergoing Treatment
  5. More Metastatic Breast Cancer Stories

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

1st Symptoms and Testing

Introduction and Symptoms

Who are you outside of cancer?

I style myself a recovering lawyer. I have had a legal license for 20 years. I’m a mom. I have 2 boys — they are now 7 and 9 — and a husband as well. 

I have a very supportive husband. He’s had to make a whole heck of a lot of adjustments since [I went] from healthy to not so healthy. He has weathered all of those adjustments with a lot of grace, which I appreciate. 

I love the Enneagram. It’s is a personality type [or] way of understanding motivations. I very much resonate with type 8, which is sometimes called the challenger. I tend to challenge systems and definitely have learned a lot in the last 20 years about being an advocate. It’s kind of in my DNA. If something is wrong, I have to fix it, which is challenging at times with the amount of energy I have during the day. 

Justice is something that’s very important to me. It’s probably why I ended up going to law school. My husband is black. He’s from Jamaica, so I’m understanding a whole lot more about the experience of people who are marginalized. That really pisses me off. I tend to get into the weeds with people about fixing those things.

What led to that first diagnosis?

I was 38 when I was diagnosed. Typically they don’t begin mammograms until 40. Because my mother is a breast cancer survivor, I could have gotten mammograms beginning at 36, but I was pregnant and nursing. 

The mammogram itself doesn’t see as well into the breast when the milk is there. It clouds the image, so it wasn’t recommended by my primary care physician. Looking back, in 2016 I began having a lot of pain in my back and in my legs. Now I understand that was the metastasis that had spread to my bones. 

I was a mom. I was tandem breastfeeding at that point. My kids were 1 and 3. I had a million things going on. I was running my law firm. You don’t prioritize yourself, I think, as a mom. [You don’t prioritize] your health, that sort of thing. It’s so important for us moms to listen to our bodies, to go to the doctor when things are wrong, and to ask the questions that need to be asked. 

I don’t know if things would have been different if I had been diagnosed sooner. Certainly, by the time I was diagnosed, it had progressed to a very significant disease load. I don’t know if things would be different if I had said something sooner. Anyway, at the end of 2016, I was in a fair amount of pain.

Finding a lump in the breast

Then in January 2017, I felt a lump in my left breast. Because I was tandem nursing and pumping every 2 to 3 hours and had been doing that for 4 years, I was certainly very familiar with my breast tissue. But because of all of the nursing, I also had more tissue than I would normally. Even though the lump was relatively close to the surface, I didn’t really fully grasp what was going on.

I thought it was a clog and went to my lactation consultant. Interestingly enough, the cancer in my body happened in my breast exactly where I’d had clogs, and the same thing happened to my mom. The areas where the tumors were that they found when she had her DCIS diagnosis almost 20 years ago now were exactly in the places where she had clogs. 

Definitely something to think about if you’re a nursing mom. Pay attention to those areas of your body and make sure that your doctors are paying attention to them as well. No one really treats your breast when you’re breastfeeding. 

Your PCP might know something. The pediatrician knows some things. The OB-GYN knows some things. There’s not somebody who’s really talking about your breasts, especially when you’re nursing, except for lactation consultants. Not every medical practice has those.

Testing for Cancer

Is there a way to have a baseline to understand changes happening?

Absolutely. It’s so important to understand that. With lactation consultants, you would want to see an IBCLC, International Board-Certified Lactation Consultant. There are different certifications, but that’s the most important one that has the most medical knowledge. 

Those professionals are so important, even with things like latching and different things as you go through your breastfeeding journey. Having that resource is so important. I had that. 

We were also part of a milk-sharing organization, so we were able to share about 25,000 ounces during the 4 years that I was nursing and pumping. Ironically, the very first person that got milk from us was someone who had been diagnosed with breast cancer while pregnant. She literally had her baby and was wheeled into the chemo suite. She was unable to breastfeed, and everything just came full circle.

What was that feeling of being able to help someone who wasn’t able to breastfeed?

We had to go through fertility treatment to get pregnant. In a lot of ways, my breasts did what they were supposed to do when the rest of my body didn’t want to. I had a lot of hormonal imbalances that we were able to correct with medications. We didn’t have to get IVF or any of those things, but we struggled to get pregnant. 

In a lot of ways, my breastfeeding experience was really redeeming in that my body was doing what it was supposed to do, and it was really doing what it was supposed to do. I had an overabundance of milk, and it was something that was a huge part of parenting. We had to adjust once they were weaned because everything could be fixed by saying, “Let’s nurse.” While tandem nursing, I got to see my boys just bond so tightly because they were nursing at the same time. 

I don’t know [if] there’s any experience as good as meeting somebody who was just so grateful for the gift of something that was easy for me. A lot of the children that got the milk from our organization were children who were adopted. A lot of them were drug addicted at birth, and that nutrition — what we called “liquid gold” — was still very important to them. 

We didn’t supply the NICUs because we didn’t pasteurize or do any of the things that the larger organizations do. I would take my bags and hand them to someone else. It was an amazing time. I was so grateful to be able to help as many people as we were able to during that time.

What happened at the lactation consultant?

She touched the area and said, “It’s probably nothing.” This is something that was consistent across the medical providers that I saw. “But I’d really like you to just go to your primary care physician and ask her.” 

I had actually picked a primary care physician who not only personally tandem breastfed her children, but also had an extra lactation certification. Again, there aren’t those doctors that treat you when you are nursing. It took a bit for me to find somebody, but I had. 

This was literally my second appointment with this particular doctor. She said, very similarly to the lactation consultant, “95% sure this is absolutely nothing, but since you’ve never had a mammogram…” Because of my mother’s history of cancer, she sent me for my very first mammogram.

How genetic testing for cancer has changed

My mother had breast cancer when they really only knew about the BRCA1 and 2. She did genetic testing immediately because [she was very concerned about her daughters]. I’m the oldest of 6, and there’s 3 girls. Because she was BRCA negative, we thought, “Oh, we’re in the clear.” 

In 2013, they updated the panel of genes that they know to look for to 40. Now, almost 10 years later, we’re at 92. If anybody has had genetic testing prior to 2013, you really should get it redone. Honestly, my mother doesn’t remember being prompted to redo it in 2013, [so] she didn’t. 

We later found out in my breast cancer experience that we carry a germline mutation ATM, literally like you get money from the ATM. ATM is part of your DNA that’s responsible for repair. If there’s a mutation in the part of your DNA that’s supposed to repair mutations, clearly that can be an issue. We didn’t find that out until later. 

I am so grateful. For a lot of young women under 40, their doctors say, “You’re too young to get breast cancer. It’s probably a cyst; it’s probably this. Don’t worry about it.” Instead, my doctor said, “Let’s double-check.” 

Mammogram appointment

I went for that very first mammogram appointment. They were very unhappy with me because, of course, as soon as they squished my breast, milk went everywhere. The machine [was] covered in milk. They did a mammogram, and they did a diagnostic ultrasound.  

I didn’t really connect to how serious it was. The radiologist came in and wanted to do a biopsy right then. To me, I was like, “Oh, you just want to follow up right now.” My doctor had said that she wanted me to go to a specialist if they wanted to do a biopsy. The specialist that ended up doing my biopsy was both a breast surgeon and a radiologist. She was able to do all of it and then did my surgery.

That was my first experience leaving somewhere against medical advice. Looking back, the social worker came in to talk to me, [and] there were like 12 people that talked to me before they let me leave. I think they thought I wasn’t going to follow up on it. I think they thought maybe I wouldn’t take it seriously. 

I’m pretty sure they knew pretty definitively right then that it was something very serious. I was just like, “No, my doctor told me to do something different.” Because I tend to be a bit stubborn when I decide I’m going to do something, I left. 

That was a Thursday. The following Monday, I was in the surgeon’s office getting a biopsy, which was a very interesting experience. I’m very thankful my husband went with me. 

I got a primary care physician [right] after we got married. I’d never had a primary care physician. I went to urgent care if I had something serious, and I had my OB-GYN that I went to every year. I really just didn’t engage with the medical system all that much. Thank God I was healthy. 

My first introduction to medical things was the fertility experience, which was terrible because it was so emotional. It was invasive, and having vaginal ultrasounds every other day for weeks on end was so not fun.

I think one of the big things that was interesting about the biopsy experience is it was done in my doctor’s office, so I didn’t have to go to a surgery center or anything like that. It was ultrasound guided, so I was lying on the table fully exposed, which then was kind of an issue. Now it’s totally not an issue. 

There was a person holding the ultrasound wand, and then the doctor had [something] like a long needle with a little grabber thing on the end, where it sounds like a click when they grab the piece of tissue. There was some pain. They used lidocaine to numb the area, and lidocaine shots are not fun to get either. 

I felt so vulnerable, probably for one of the first times. [I was] in a doctor’s office, doing [the] procedure right there, where I hadn’t had time to prepare. All of the other testing that I had, somebody explained it to me, and then I made the appointment. I had time to assimilate to what was happening.

This was like, “No, we need to do this biopsy right now.” Oh, okay. Then I leaked milk and blood from the site of the biopsy for about a week afterwards. She had to biopsy a couple of my lymph nodes. The lymph nodes turned out to be full of milk. Not cancer, just milk. 

I got to watch on the ultrasound screen as she was doing it and she narrated. It was a very different experience, different from anything that I had ever experienced previous to that. I think I was still in denial at that moment. 

My father-in-law just passed away, but my husband and I had cared for him. On our third date, I met him in the nursing home. He had just transitioned into a nursing home. My husband had been his caregiver as a young professional for about 10 years before he went into the nursing home. He had 3 strokes. 

I’m so thankful that my husband was much more in tune with, “Okay, this is serious. Yes, we need to do this right now.” I had meetings. I had client meetings, and I wanted to leave. He was like, “No, no, we have to do this now.” 

He was very good at knowing that it was serious enough to do something. I think I was a little emotionally disconnected from the experience at that point. Mostly because I had no idea what was going on.

Breast Cancer Diagnosis

Testing Results

Insurance issues and waiting for results

This was all [of] January, February, but it was April 8th of 2017 when I went back to get the results of the biopsy and they confirmed that it was breast cancer. 

Yes, it took a while. One of the reasons it did was because my insurance company was only contracted with one lab, and they were significantly backed up. It was across the state, so there was mailing things back and forth and all of that. 

One of the very big lessons I learned right at the beginning was it is not our doctors that run our medical care; it is the insurance companies. [I had to understand] early on what my insurance covered, what it didn’t, and how we had to handle the things that insurance didn’t cover. Fighting with my insurance company — it seems like that’s a full-time job in and of itself, because insurance is ridiculous.

When did you realize this was something more serious?

April 8th of 2017 was when we found out it was breast cancer. I think then, we still thought [I would] go through treatment and be done. I had my mother’s experience to compare with. She is amazing and worked all the way through chemo and radiation and everything else. She had a double mastectomy and did all the things that you need to do. 

My mother still [has] no evidence of disease now, almost 20 years later. I had her experience to think about. We really thought in April of 2017 that it was going to be a situation where I went through treatment, and then we could put breast cancer in the rearview mirror. 

When we found out it was cancer, I left that appointment with an appointment with the medical oncologist, an appointment with the radiation oncologist and plastic surgeon, etc. I had all these appointments to learn about [and] all of the people who were going to be on my team. 

I am so thankful that my introduction to this whole experience was [with] someone who said, “I have other doctors I work with very closely. We text each other.” She was texting different doctors to get me in the next day and to talk about treatment options. How amazing!

Genetic testing

The only fly in the ointment, looking back at that initial experience, is that we did genetic testing, but she only did BRCA1 and 2. Here we go again. My mother didn’t get retested, and then this surgeon was only looking at BRCA1 and 2 [and] did not do the full genetic panel. 

I understand that it is hard sometimes to get those things covered by insurance, especially when you’re at the very beginning of these breast cancer experiences. Now when I talk to newly diagnosed people or people who are beginning the process, [I tell them] to insist on the full genetic panel, because BRCA1 and 2 are not the only genes that are associated with breast cancer. There are now 93 that they look at and that can change your treatment. 

There’s literally an algorithm where they plug in all the different details. Your risk changes when you have cancer that’s associated with a genetic mutation, which is still only 12% of breast cancer. The vast, vast, vast majority of breast cancer has no genetic or discernible basis for it. Our genes just go haywire, or our cells go haywire at some point. 

Being connected to other patients

We went into all of the appointments. I remember the radiation oncologist literally spent 2 hours with us, [and] the medical oncologist spent about an hour. All the doctors were so kind and caring, and it was a good introduction to something terrible. 

I had my lumpectomy. We decided on a lumpectomy versus a mastectomy. Legally, an insurance company is required to cover a mastectomy if the patient wants it, as well as reconstruction. No insurance company can refuse to cover those things. My doctor was like, “All of these options are yours.” 

She also connected me with a couple of her patients who had different surgeries, which I thought was amazing. I haven’t heard of other doctors doing this, but she connected me with somebody who had a lumpectomy, somebody who had a mastectomy, and somebody who had a double mastectomy. That was very helpful because I could compare and contrast their different experiences.

How did you decide which option to pursue?

There’s always pros and cons. Everybody is an individual. My mother had a double mastectomy and then did reconstruction. She had a couple of issues where they had to go back and redo things. One was a whole surgery where she got the scar tissue tightened up, and they had to go in and loosen it.

Honestly, my biggest issue at that point in time was recovery time. I didn’t want to have to have multiple procedures. Typically, when you have reconstruction, they put an expander in. Then you go in over time, and they inject more and more saline into that expander. You’re actually stretching out the skin to make room for the implant. Then you have surgery to put the implant in. The whole reconstruction process can take up to a year.

At the time, I opted for an oncoplastic reduction because we didn’t know I was stage 4 and we thought this was going to be an experience [of] go through it, be done, and it would be in our rearview mirror. 

They did the lumpectomy to remove the cancer. They took tissue from my right breast to fill in the hole, or the divot, because it was a pretty big area that they had to remove. Then I got a lift and all of those fun, good, nice things to have everything look aesthetically the same. 

That was important to me then: the aesthetic, how much I would have to be in various surgeries, how long it would take. I really wanted to be finished as soon as humanly possible with the medical side of things, because I thought, “Hey, I got to go back to work. I got to get back to doing the things that we’re doing.” 

Preparing for the lumpectomy

I had my lumpectomy in June of 2017. It was pushed off a little bit because that particular surgery, there were only 2 plastic surgeons that knew how to do it with my surgeon, and I had to dry out my milk. My doctor handed me a paper with 2 or 3 things to do, and she said, “In about a week, you’ll have no more milk.” 

I had been nursing and pumping every 2 to 3 hours for 4 years straight, and it took a lot longer than 1 week for my milk to dry up. One of the things that they needed to do was do an MRI to be sure that there was no cancer in my right breast. We had to get the milk out of the way so those images would be effective and reliable.

Scans and recovery from lumpectomy

I hadn’t had a lot of scanning, but I get PET scans every 3 months. I’m radioactive for at least 24 hours, depending on which isotope and the half-life and all of that. I typically have to stay away from my kids overnight after a PET scan because they don’t know how radiation affects a growing body.

[According to] the picture that they pulled out, the lumpectomy went great. It was a 7-hour or something surgery. I got to go home the same day. It was a great recovery. It was a big change. I went from DD to A. That was a very big change. I was normally an A, almost a B cup. Nursing definitely gave me more tissue than I had normally.

That was a big adjustment, too. Clothes fit differently. You have to wear those awful compression garments for the first [couple of] weeks. It was a big adjustment, but I was still working, still trying to have as much normalcy as possible. 

Receiving the Diagnosis

When you received the diagnosis, what staging and details were you given?

My doctor was perfect for me because she was very direct. There wasn’t a whole lot of packaging or hemming and hawing. It was, “Okay, it came back. It’s breast cancer. It’s hormone positive, strongly hormone positive.” At that point, we didn’t have the HER2 status because they had to do the extra testing. 

I still have the paper where she drew where it was. I had a tumor and then an empty spot, and then it would look like the cancer was developing a second tumor. It was kind of this weird, almost 2 tumors. At that point, she said most likely I was stage 2 because of the size of the tumor. 

At that point, I had not talked about any of the other symptoms I was having. There wasn’t any sense that it had spread anywhere at that point. When we did the lumpectomy, they took 4 lymph nodes. 

This is one thing that I learned from my mother. When they do lymph node dissections and they take 26 or 30 lymph nodes out of your body, that compromises your lymphatic system in such huge ways. My mom is a physical therapist. At that point, they were already going to do chemo, and she said, “If you take all those lymph nodes, will that change my treatment plan?” They said no, and she said, “No, thank you.”

Node negative

They injected dye around the nipple in the 4 quadrants. I think it was an ultrasound, or it might have been a different type of imaging. They watch to see the first 4 lymph nodes that the dye went to. Those are called sentinel nodes. Those are the first lymph nodes that would be processing any kind of fluid that came from the breast area. 

They took those 4 during my surgery, tested them, and they were determined to be node negative. The typical spread of cancer is from the breast through the lymphatic system into other areas of the body. In about 5% of us — of course, I always fall in these weird percentages — it has spread through the blood before it ever really recruits the lymphatic system. Nobody knows why that is. 

Statistically and generally, if you are node negative, [typically] doctors then say, “Okay, you don’t have to worry about the cancer having metastasized.” Because I was node negative, they initially staged me at 2A. 

Then they sent off the tumor cancer tissue from my lumpectomy to have genomic testing done. I talked about genetic testing. That’s your DNA, your blood, and what you get from your family. Genomic testing is to look at the characteristics of the cancer to see what kind of mutations it has, etc.

Oncotype test results

It’s called an Oncotype test. There’s Oncotype and MammaPrint. They’re basically the same thing, just 2 different companies. They’re able to score, based on your different markers, your risk of recurrence. 

My risk of recurrence came back in the gray area, which is super weird, knowing now that I was already stage 4 at that point. At the time, the gray area for me at my age was 27, and 25 to 30 was the gray area. That’s no longer the gray area. Now over 25 is recommended for chemo. They keep learning, which is so good. 

My doctor said I wasn’t at 30, which would have made me in the high-risk area, but his personal, “definitely get chemo recommendation” began at 25. Because I was 27, he said, “You should consider chemo.” The report that we got said if I did chemotherapy, it would reduce my risk of recurrence by a little over 20%. For my husband and I, that was enough of a percentage that it made sense to go through chemo.

We scheduled chemo, and that was Adriamycin and Cytoxan. Adriamycin is often called “the Red Devil.” I would do 4 rounds of Adriamycin and Cytoxan and 12 rounds of Taxol and then radiation. That was the treatment plan. 

The nurse in my doctor’s office made a mistake and checked the box for them to check my tumor markers at my first chemo session. Tumor markers are various proteins that are given off and are in the blood when cancer is spreading. It was a mistake. It’s not standard of care. A lot of doctors don’t even look at tumor markers.

»MORE: Read patient experiences with doxorubicin (Adriamycin) chemo

Blood work, scans, and a strange phone call

In June, I had my first chemo session. My doctor called me the day after and said, “There’s something amiss with your blood work. We want you to do a bone scan and a CT scan.” I was hopped up on Benadryl and all of the other pre-meds they give you. Again, I didn’t freak out. I was like, “Okay, sure. More tests. More scans.” 

I had asked about the PET scan. He said, “It’s hard to get them approved by insurance, but we’ll do it if you want it.” He didn’t seem very concerned about doing scanning, so I was like, “Oh, okay,” and didn’t push it. I don’t not push it anymore, because I think my intuition was telling me we needed to get more information. 

I went in for the bone scan and the CT scan. It was a whole day at the hospital. I vividly remember having client consults, drafting pleadings, and doing all these things from the waiting area. Then we got the call June 22nd of 2017, and the nurse who called said, “You just need to come in. It doesn’t matter when. Just come.” 

I was in the middle of preparing for a hearing and was totally distracted. I called my husband and said, “I had a weird phone call. They’re not even making me make an appointment. You don’t need to go. I’m sure it’s nothing.” 

Thank God my husband had the presence of mind, because of his experiences with his father. [He said], “Doctors don’t say, ‘Just come whenever you can get here. We’ll see you.'” 

Receiving the stage 4 diagnosis

My husband took me to the last hearing that I conducted as a practicing attorney, and I won. Of course, you have to include that. My husband took me to the hearing, and then we drove up to my doctor’s office.

What’s funny is I didn’t really like the medical oncologist the first time we met him. He has a daughter that’s very close to my age, and he was just very paternalistic. [It was different] going from my breast surgeon, who was like, “Let’s talk about it. All the details. Let’s make the best decision.” 

He was very like, “You’re going to do X; you’re going to do Y.” I kind of bristled at that. It’s kind of like, “What, you’re going to tell me what to do?” In hindsight, he was the perfect doctor to have broken that news to us. 

He brought us back into his office. He put his hand on my knee. We were talking about how breast cancer was going to be something that was going to be an experience, a season, and you would die of something else. He said, “You’re stage 4. This is going to kill you.” 

That was extremely sobering. It was totally out of the blue. Totally not expecting that. I had a 5-centimeter tumor in the middle of my right femur. My breast tumor was only about 2.4 centimeters. It was bigger in my leg than it was in my breast. They were worried that my bone was going to shatter. 

Processing the Diagnosis

Initial response to the diagnosis

My first thought after he said this was, “My kids aren’t going to remember me.” They had turned 2 and 4 at that point. He started giving some statistics, and he was very careful to say, “You are not a statistic. Statistics are not everything. I have patients that have been living for 10, 15 years with metastatic disease. But this is a serious situation.” 

I had bone-only metastases at that point; it only spread to the bones. There was some data that was a longer life expectancy than if cancer was in your organs. He shared that with us. He was very kind, and he let us ask all the questions. 

Of course, I tried to pin him down onto, “What is the timeline? I get 10 years, right?” He’s like, “Well, some people do.” It was a very good balance of hope and reality. He was going to manage me being on tamoxifen, which is typically a hormonal medication that you’re on after you finish chemotherapy when you have early-stage breast cancer. He said, “Now, we’re going to be talking about totally different medications.”

How did you process your second diagnosis?

I think partly because of my training and partly because of my personality, I tend to think about something first, and then the feelings come later. At the time, it was much more of a project management type of, “Okay, how are we going to fit all this in?” I was thinking much more about the nitty-gritty. “This was going to be the plan, but now that’s all blown out of the water.” 

It was a lot of trying to assimilate and understand what’s going to happen now. I vividly remember he sent in his social worker, who was 22, right out of college, and she was trying to talk to us about how we felt about things. We were both just like, “Now is not the time. We’re overwhelmed with all of this.” 

We got into the car. I told my husband, “I can’t drive. You have to drive.” My brain was just whirling, and we both cried all the way home. A lot of it was about the kids. A lot of it was that they’re going to lose their mom at such a young age. One of my first thoughts was, “I have to protect them against the crazy stepmother that my husband is going to marry, this other woman, and there’s going to be other kids.”

»MORE: Patients share how they processed a cancer diagnosis

Mental health support

Your brain goes to so many weird places when you have a trauma like that. I don’t think that my executive functioning was fully online. I think [I was] just kind of bouncing all over the place. It took about a week, I think, for things to really marinate and for us to really wrap our heads around things. 

Of course, I was in surgery within a week to get titanium rods put in both femurs, and so there were a ton of appointments as well. We had a business, my law firm. We had employees. I had a roster of clients. There was a lot of, “Okay, I have to take care of all these different pieces before I can even focus on what’s going on with me.” 

It was about a week or so, maybe 2 weeks after the diagnosis. I started seeing a psychiatrist because I realized very quickly that the coping mechanisms that I had developed over my 38 years of living were not up to the task of dealing with this huge diagnosis. 

[I] sought out mental health treatment and got on medication pretty much right away to manage anxiety. There was depression, those dark nights of the soul, when you are just thinking about the end of your life. That’s what I obsessed over for the first couple of weeks.

Getting all those different pieces of support. My parents came up. We lived in Orlando when I was diagnosed. My parents were in Miami, so they came up. My mom was with me in the hospital, spending the night after surgeries.

Realizing how serious things were?

I didn’t fully grasp how serious things were. I did on some level, but it became so real when we were in the orthopedic surgeon’s office. He pulled up my scans. I had not looked at my scans. Now, I look at everything, but at that point, I was relying on the doctors to tell me what was going on and what was in the scans. He pulled it up, and it was a picture of my right femur. 

On an X-ray, your bone is supposed to be white. That’s the color it’s supposed to be. Mine was mostly black, or it looked that way to me, because there was so much cancer. If you think about your bone being round or 3-dimensional, much of the bone was full of cancer. In that area where the tumor was concentrated, it looked like there was only really one area of the bone that was still solid. 

Reacting to the X-ray

One of the nurses wouldn’t make eye contact with me through the whole appointment. She told me later that it was because, of course, I had started chemo. I was bald. I did not look healthy. She told me later that it was just really triggering for her because her sister had just been diagnosed with cancer. She made me this bracelet. It was very kind. 

I did not fully connect with how serious it was really until that moment. I didn’t fully understand even some of the conversations that were going on among my doctors. One of my friends actually saw my radiation oncologist recently, and she expressed some amount of surprise that I was still alive. 

I think [it was because of] the disease load. It was in every bone, and every bone was liberally sprinkled with cancer: all through my spine, it was in [my humeri], but my legs were the worst. Obviously, you need your femurs to walk and to remain upright. Those are kind of important bones. That was the focus. 

I found out on a Friday about my diagnosis. The following Friday, I was in surgery to have the titanium rods put in both femurs. We decided to finish the Adriamycin and Cytoxan, save the Taxol for later, and then we scheduled my hysterectomy, too.

Processing Cancer and Finding Community

Processing the Diagnosis

When did you allow yourself to grieve?

There’s a lot of grief when it comes to any cancer diagnosis. I think that you go from being a healthy person generally. It’s a betrayal, right? Your body has betrayed you in a lot of ways. I think that really resonated with me a lot at the beginning. 

I did what a lot of people tell you not to do, which is I went online. Certainly there was Google, but then through some of the ladies that I talked to that my surgeon had sent me to — and my mom because she had been through treatment as well — [I found] different support groups and other people to talk to.  

[There was] one thing that was extremely traumatizing. One of the support groups I joined probably 2 or 3 weeks after I found out I was stage 4, 3 of their members died in the week that I joined. That was so sobering and overwhelming. I don’t know that I really did process things very well initially. It was not until things died down a little bit. 

We transitioned my clients and a lot of my staff to the firm of some dear friends of mine. It was a good transition. They practiced very similarly to me. It was a lot to undo all of the contracts. We had actually just signed a contract to move into a new office. 

Once the logistical stuff was done — because again, I think first and feel second. I focused on doing all of that. I had so much downtime. [I went] from working at a million miles an hour with my hair on fire to having all that downtime. My kids were in a Montessori school, so I had all that time during the day. 

What helped with your emotions?

That is when a lot of the emotions started coming, and I found a lot of relief in writing. I have a literature undergraduate degree, so writing, journaling, and that sort of thing has always been something that has been helpful for me. I found a lot [of] release there. The psychiatrist that I saw did talk therapy, as well as the medication. That was helpful, certainly. 

Connecting with other people who are going through the same thing, I think, has probably been the number one thing to alleviate some of the intensity of those feelings. The ability to say, “I’m going through X,” and there’ll be 20 people who respond, “I’m going through the exact same thing.” 

That was such a weirdly comforting thing that we’re all going through something so awful at the same time, but it was. It was really helpful outside of the place where all the people were dying. I got out of that group because that was too much at the beginning for me. 

I now moderate a Facebook group that is specifically geared toward the newly diagnosed. We take the people in the first 2 years of MBC diagnosis and really mentor and model for them. We’re kind of onboarding them into the MBC community, and then we get them into other groups and let them graduate. [We do this] because of those initial experiences that a lot of us have had, because death is such a constant in the MBC community. 

Coping with cancer and loss

Finding the coping skills and finding the ability to handle that, I’m still not good at it. It’s been 5 years. I’m still not good at it, but I have more coping skills now. A lot of it has to do with these key people that have the same disease that we can really just talk frankly about what’s going on. Support groups where that’s facilitated [have] helped, in addition to the direct connection. 

I started CaringBridge sites pretty early on just to keep everybody informed. Things were changing every day, and that made a lot of sense to keep everybody informed that way. I think writing and talking with other people have really been the best things.

All of them understand. It seems like the intensity happens at night. The amount of times that I’ve texted friends of mine in the MBC community — I’m always thankful for people in different time zones because it’s not the middle of the night for them. 

[I’m thankful for] being able to talk things through and just really say that this what I’m feeling at this moment instead of stuffing it. I was a very good stuffer before this. Again, coping mechanisms that do not work for a terminal diagnosis. Stuffing is not good. That’s not a good thing.

Parenting while dealing with cancer

Being open with your children

Our parenting style has always been to be as open and honest as possible with our kids on the correct developmental level. One of the things has just been to talk to them, to make sure that they’re equipped with information generally. We’ve done a lot around helping them to name their emotions. 

We have a whole lot of books that we read. “The Invisible String” is a big favorite, talking just about how whether you’re at school or somebody is not around anymore, that love connects you to the person that you are connected to. 

I think that one of the things that I read when I was a new mom was just this concept of how we’re always the ones behind the camera. We’re always taking the pictures, so we’re not often in the pictures. That’s for a lot of different reasons. 

I have prioritized having regular professional photoshoots. We do one for Christmas cards every year. Then I’ve told my husband, “I don’t want all the stuff for Mother’s Day. I just want a photoshoot so that we have that record of them, of me being in their life.”

»MORE: Parents describe how they handled cancer with their kids

Making memories with your children

Both of them are very active children. They’re both boys. I was always very active with them prior to my diagnosis. That was a huge change because I was on crutches and then a walker and wheelchair, especially after my leg surgery. 

Energy is something that is in short supply when you’re in treatment and radiation. It makes you so tired as well.. I had radiation to my legs and to my back. [I had] to adjust to not being active with them, but finding other times of connection with them. 

All the parenting stuff talks about how you’re not going to be in your children’s memories if you’re not in their lives today. Because I’ve had the ability to have more time with them, because I’m not working and running around and having a million to-do’s, I’ve been able to be a lot more intentional in spending individual time with them, putting the electronics away. 

I do a date with each of them once a week, where we go out. It’s usually for ice cream because of course they want ice cream, although my older son is now quite obsessed with the French bakery and croissants and lava cakes and all of that. 

Every week, and now we’ve done this for years, I’ve taken them out and just had an individual conversation with them about whatever it is that comes to their mind. I’m just trying to be very intentional about being in the moment with them, about listening to them, trying to consider very carefully the lessons that I want to pass on to them. I also have memory boxes for them. 

Leaving letters for the future

Our niece got married. Her husband was there dancing with his mom, and I about lost it. Of course, I immediately thought, “I’m not going to be able to do that.” The likelihood of me being here, although we hope so, when they get married is low. I’m not going to be able to have that dance with my son at his wedding, either of them. 

What I have tried to do in terms of channeling that emotion, channeling that energy, is I sit down and write them a letter to open on their wedding day. I have a box full of letters for different times. I don’t even know where I came across it, but I came across a list of all the times that you want to hear from your mom. 

You come back home after your first binge drinking or wake up with your first hangover, break up with your girlfriend for the first time, buy your first car — all those milestones and moments that it is unlikely that I’ll be here for. I’m trying to have a card for them to open with my handwriting, with my reassurances and those kinds of things.

Saying the important things while you can

I have realized over the last 5 years — not just with my kids, but with everybody — that you have to say the things that are important. You have to say that you love people. You have to say that you care for them. You have to verbalize those things because we have no idea what’s going to happen tomorrow. 

For so many of my friends in the MBC community, once the cancer gets out of control, it’s a very short time period between finding out there are no more treatments and death. We typically don’t get a lot of time in hospice. I have friends in the last month that passed away, and they literally went out of the hospital into home hospice and died the next day. That is the trajectory of this disease. 

This is my legal training. I try to look at the worst possible thing that could happen, plan for that, and then everything else is taken care of. We tried to look at those kinds of things unflinchingly, but saying the things that you need to get off of your heart, I think, is one of the big things that we’ve tried to do with the kids. 

I’ve just tried to do with relationships in general because you don’t know what’s going to happen. I think those of us dealing with a serious illness, we have a little bit more of a sense of that, just because we have a serious diagnosis. Somebody can die at any point.

Preparing financially

We also redid our trust. I am thankful that as a young professional, I got a good private disability policy. I also signed up for probably more life insurance than I really needed to because I practiced a little bit in personal injuries, so people who get into car accidents. 

Ever since then, even though I despise insurance companies, I have every type of insurance you can think of because I’ve seen what happens when you don’t have the coverage. It’s a domino effect of losing things — your house, your car, your job, etc. — when something serious happens. 

Thankfully, we had planned for that. We redid the trust that we have set up for the boys. One, I was trying to protect the money from the evil stepmother. See, it’s still a theme. It’s still something I think about. Also, just thinking I’m not going to be around to help them figure out what to do with money with these kinds of decisions. 

My husband’s a banker. He’s obviously very well equipped with that. We have a few more restrictions on what they’re going to be able to do with that money, like not being able to get the principal until they’re at least 30. I just tried to be very intentional about those things, about my legacy, and about what I’m going to leave behind.

Living with Cancer

Jolting changes to life

I think the average age of breast cancer diagnoses is still 60. It’s still mostly people who are either retired or heading in that direction. But when you’re diagnosed in the middle of your career, the middle of what’s supposed to be your productive years, it’s jolting on so many different levels. 

I talked about all that time that I had on my hands after things got wrapped up with the firm. When you have a career versus just a job — maybe it’s not as much for women as it is for men — I think a lot of our identity becomes wrapped up in what we do for a living. 

I love the spoon theory, where we wake up with less energy or less spoons than a healthy person. We can’t just drink a cup of coffee and get more energy. Once the energy is gone, it is gone.

For me, anyway, the idea of advocacy has always been something that permeated my entire life. I think I identified with helping people and advocating for people. That sort of thing is a big part of who I am. When you are deprived of that purpose or the thing that gave your life purpose, then you start looking around and saying, “What am I supposed to do now?” 

For me, it was a lot of boredom. You can only read so many books and watch so many videos or movies on Netflix. I very quickly found that sense of restlessness. Certainly, I also had a lot of physical impairments, having to really work at getting mobile and being able to walk better. At the beginning, there are cognitive deficits that come about because of chemo. 

Managing self-expectations with low energy

A lot of what I struggled to figure out was, okay, I have these expectations of myself. I have this knowledge of myself as a healthy person. What is this now? What can I do now? That was where I found my way into patient advocacy. I’m not just advocating for myself, but working with nonprofits to advocate for others in the community. 

[I] very quickly found that there is a hole when it comes to the people getting good legal advice. I had great legal advice because all my friends are attorneys, and all I had to do was call up a friend of mine and ask a legal question. Most people don’t have that access. 

[I] started to delve into the ability to use my experience and use the things that I had already done to do that, but then still struggling with this adjustment of, “I can’t think of the word.” I love the spoon theory, where we wake up with less energy or less spoons than a healthy person. We can’t just drink a cup of coffee and get more energy. Once the energy is gone, it is gone. I would literally sit there and fall asleep sitting talking to somebody.

That’s a huge adjustment from being very high functioning. I think that those of us who go from a 90-miles-an-hour career to a cancer diagnosis, that’s a much bigger change than those people who are either already retired or kind of winding down in terms of the things that they’re doing. Plus, I have young kids, versus people who have adult children. 

Being diagnosed with cancer at a young age

I think the younger breast cancer experience is very different. I think that a lot of hospital systems and survivorship clinics don’t often remember that it is very different for us. That has been a bone of contention between myself and every single one of my doctors about how the general rule just doesn’t apply to me. You can’t just make an appointment for me during school pickup, because DCF gets a little upset if I leave my children at school. A lot of that has been something that I’ve had to educate people about. 

Social media has allowed me to connect with other younger women with breast cancer, because our experience is so different. We’re a minority still, but the under-40 population is the only segment of the population where diagnoses of breast cancer are growing and continuing to grow. In all other segments of age ranges, it’s declining. I don’t know why that is.

In some ways, it’s kind of a double-edged sword, but it’s kind of good that more of us are educating our doctors because I think they will be more sensitive to our experiences. It’s obviously a terrible thing to be diagnosed at a young age with something so serious. 

Complete overhaul of life

Because mine was a de novo diagnosis, I was not given the opportunity to go through treatment, have some years of no evidence of disease — and you notice that I’m not saying cured because there is no cure for cancer — and then have a stage 4 diagnosis. 

I find that the people who go through that trajectory in terms of their disease just have a very different experience. It was just a complete overhaul of our entire lives from the very beginning. Not that I think that that’s necessarily a bad thing overall. 

I think we can learn a lot from people who have serious diagnoses because we have a whole different perspective on the things that matter. How often do we get so focused on things that don’t matter in our lives because we’re just caught up in whatever it is?

Community

The importance of finding support and community

First, let me talk about finding people. Most cancer centers and doctor’s offices have either a support group that’s managed by a social worker or peer support groups. COVID changed a lot of that in terms of in-person groups, although I still think that meeting with people in person is so very important. 

Social media has become a really good way of connecting to people that have a similar disease experience. Even the people who don’t have children, I find that sometimes I can’t even connect with them as much. Yes, we can connect on the disease level or on health care experiences and insurance. But when it comes to the lived experience, the people who have young kids are probably the people that I end up connecting to the most. 

I don’t think I’ve ever met somebody who has been diagnosed with cancer who doesn’t have a story of healthy people ghosting us. What I mean is when you have somebody who has been in your life in one way or another, you have a serious diagnosis, and they do not engage in any way. They completely leave. 

Over the last 5 years, that’s happened to me. It’s happened to me with family. There were people who just couldn’t handle things. I have mostly gotten to the point of understanding and remembering and reminding myself that this is not about me. It’s about them. There are those people who don’t have the capacity to enter into the suffering of somebody else. 

I have found over the last 5 years that when we do enter in, when we sit with people, there is this whole concept of holding space and just being with people. [We’re] not trying to fix anything, not trying to change anything; we’re just connecting and being with someone else in a space, whether it’s virtually or in person.

The connections that I have made in the MBC community are the deepest that I’ve ever had in my entire life, and I mean people even that I’ve known for decades, sometimes even more than my husband. It’s because we get each other’s suffering on such a deep level. 

I hear from various people that people in other cancer communities are often jealous of how in the breast cancer community we do this community thing pretty well. Yes, there are still disagreements and whatever, but we do this connection thing in a way that I’ve never experienced in any other segment of my life. 

Making deep connections in the MBC community
Acute vs. chronic trauma

I have continued to be connected to people who don’t have cancer, but the vast majority of the people who have stuck around are the people who’ve been through trauma themselves. We have a great group of friends from Miami, where we lived for a bit, where each of them has a child with a very serious diagnosis, whether it’s autism or strokes or other syndromes. 

They get on a different level what it’s like to be in a trauma. [It’s not like] you get a diagnosis, you go through treatment, and maybe you’ve got some side effects that last. I don’t want to discount the fact that there are side effects that last after chemo. The people who are in the trauma for life, you’re in that trauma over and over and over again for the rest of your life. There’s a sense of community, and there’s a sense of connection. There’s a sense of going deep really fast that happens in no other area. 

You remember the emotions. You remember the connections with these people or with people that have made an impact on you.

The price of that is that when the people you have gotten that close to and you have connected that much to, when they die because they have a terminal diagnosis like mine, a piece of your heart goes with them. There have been several times where I’ve gotten very close to somebody, and they died. I said, “Well, forget this advocacy stuff. I don’t want to be connected to it.” 

But I keep coming back because of the genuine connection. I read a meme, something about how amazing it is when you’ve got somebody who has gone through the fire, and they’re handing buckets of water to the people entering into that same fire. That is a good visual for me of what we do in the MBC community. Sometimes well, sometimes not so well. There’s a connection there that’s just like no other connection. 

Disenfranchised grief

Some of these people I’ve never even met in person, which is a weird thing and does lead to some of the concept of disenfranchised grief, where it’s not normal or mainstream grief. You talk a lot about miscarriages or the death of a pet or somebody you’ve never met online that you’re grieving for. There aren’t great grief rituals in those contexts. You can’t necessarily go to a funeral and have the expected support and things that would happen [if] you lost your parent.

My husband just lost his father, so we just went through this. It’s that sense of being disconnected at that last piece so that you don’t get a chance to do the grief rituals. A lot of families do their funeral. It’s not necessarily public, where they invite people from the community to attend those things. It’s weird, and it’s a strange, great space to be in. That’s something that we talk a lot about, just developing grief rituals that help us. 

There are 3 deaths. One is when your physical body ceases to function, the second is when your physical body is buried, and the third death is when people stop saying your name.

One of mine — I’ll grab my bowl over here — is for the people who I’ve gotten very close with, I have a rock with their names on them. I keep it in my space. That’s part of how I remember them. I sit down, and I decorate a rock after they’ve passed. 

I’m not very artistic, so I can do little flowers. That’s pretty much the extent of some of my creativity. Some of them just have the name and a heart on them.

We’ve done a fair amount of grief circles, where we get together and talk about and memorialize that person. I keep close to me the things that people have given me. I have various little notes and a stack of cards that I’ve gotten from various people who have since passed away. 

Every now and again, especially on the anniversary of their deaths, I go back through that and just remember the things that were good about that relationship, remember the things that I’ve gotten from that, and remember that connection and that love. Because that’s what keeps bringing me back to the community.

What do you feel when you are holding the rocks with their names?

I remember them. I remember the times that we had together. There’s that saying that people don’t remember what you said, but they remember how you made them feel. You remember the emotions. You remember the connections with these people or with people that have made an impact on you. 

One of the things that we talk about our kids quite a bit about is when they’ve had different experiences with different people — especially the ones that we’ve lost, like my husband’s father — we talk about that person. I have learned over time to not stuff (because that was one of my coping mechanisms before cancer), but talk about the people. 

On Twitter and other places on social media, we talk about these people a lot. I still tag people who have passed in some of my posts when we’re talking about various things that remind us of that person. In our support groups, we talk about these people. 

I don’t remember what tradition it’s in, but I read somewhere that there are 3 deaths. One is when your physical body ceases to function, the second is when your physical body is buried, and the third death is when people stop saying your name. I think one of the things that we do in our community for each other is that we say each other’s names.

We talk about the impact that those people have made, especially the ones who have been advocates and who have been very public in what they’ve accomplished. We’re just honoring their accomplishments and honoring what they were able to do with the time that they had. 

It all helps. None of it’s easy. None of it is simple. I think everybody has different things that help them process. 

Remembering as a way to heal

There’s a podcast, Our MBC Life, that is specifically for the MBC community and is created by the MBC community. It’s through SHARE Cancer Support. Every year, we have a memorial episode, and everybody calls in to say the names of the people that we’ve lost in the last year. 

It’s a very difficult, but a very healing time to really focus on the positive impact and the things that people did that touched us. Those are the things that I want people to remember about me. 

Having that as part of the routine is helpful, and I think it’s helpful to begin talking about that with my kids. They dealt with their grandfather’s death, I think, better than they would have if we had not been doing a lot of this, talking about what happens when people die. “Yes, that’s Grandpa’s physical body, but that’s not Grandpa anymore. His spirit, the thing that makes him him is not here anymore.” 

I’m hopeful that doing some of that and having that be very natural, matter of fact — this is the part of life, birth, death, and all of that — will help my kids make that transition after my passing as well. I’m trying to be very intentional even about prepping them for that.

Undergoing Treatment

Different Treatment Options

What were your side effects from treatment, and how did you manage them?

The way I’ve learned to look at treatment is that the more information we know, the better the doctors can prescribe the right treatment. One of the challenges that we had in the first about 4 and a half years of my treatment was because I only had bone mets. It’s very difficult to get information about the metastases. 

Stage 4 is when the cancer has left the original site and gone somewhere else. For me, I think about 60% of the cancer went from my breast to my bones. When you try to get a biopsy of a met that’s in a bone, you have to decalcify it before you can actually look at it under the microscope. That process of decalcification often destroys the cancer. We had not been able to see how the cancer was mutating. 

In a metastatic cancer diagnosis, we’re basically on treatment until the cancer mutates around the treatment. Knowing what treatment to be able to target something in the cancer, to stop it and to deprive it of fuel, is why I had the oophorectomy to check out my ovaries, because that’s the main source of estrogen. 

For those of us with estrogen-positive breast cancer, that’s typically the strongest receptor, so that’s the main thing you want to take away. The cancer in my body is now resistant to a lot of the hormonal medication because it has learned, because cancer is always learning and mutating around. 

CDK4/6 inhibitors

We’re testing what we can through liquid biopsies. In January, the cancer spread to my liver, so for the first time we were able to get a met and look at it and see how it had so fundamentally changed. Unfortunately, cancer treatment is a lot about chasing. Not chasing but staying ahead of the cancer, because we don’t want to chase the cancer. Once we’re chasing it, it’s gotten out of control. We want to control it as much as possible. 

The good thing for me was that going through Adriamycin, kind of the big chemo, meant that I could stay on targeted therapy for 4 and a half years. My first line of treatment in 2017 was Ibrance, which was approved by the FDA in 2015. I was able to be on a medication that had just recently been approved by the FDA, which is huge. 

That line or that class of drugs, the CDK4/6 inhibitors, has really changed the landscape of breast cancer. Starting in 2015 with Ibrance, and then there’s now a fourth one that’s being added to that class. People are living a whole lot longer with far less side effects. My first line of treatment after I finished chemo was Ibrance and letrozole, and I was able to be on that for 2 years.

There were very low side effects. Most targeted therapy affects the bone marrow, so we had to watch for low white blood cells, or neutropenia. I was always immunocompromised and having to be careful. The main side effects were the blood counts and some fatigue. 

Switching to Piqray

The value, I think, of having gone through that misdiagnosis was that I got the big guns, Adriamycin, and then I was able to get 2 years of stability on Ibrance. Then in August of 2019, the cancer mutated, but it was still in my bone. We switched to a different targeted therapy, Piqray. 

Ibrance works by disrupting the CDK4/6 pathway, and that’s how cancer grows or can grow with the pathway that cancer often uses to grow. Piqray was targeting a very specific mutation called PIK3CA, which is actually present in about 80% of people with breast cancer. It’s pretty significant. 

In 2019, it was approved by the FDA in May, and I started it in August. I try to have those dates because that is research benefiting people directly. Now, it typically takes about 10 years for medication [to go] from concept to actually get in the clinic, although there are some new ways that drugs can be fast-tracked, and things like that that have helped. It takes a long time for medication to get from concept to actually be given to the patient.

Research and fundraising

It’s so significant. Research advocacy has been something that I’ve gotten really involved in. I go to all the big conferences. I think my medical oncologist was a little surprised, and I was like, “Hi, I’m here at the conference for all the doctors.” 

It gives me a little bit of a sense of control. You’re so vulnerable, and you are so out of control when you are in the health care system, that having even a little bit helps me. It helps me cope with the uncertainty by learning as much as I possibly can about the drugs that are in the pipeline, about what trends are we seeing (you see that in the big conferences), and where the drug companies are reporting about their data. 

One thing that has been a huge part of that is participating in the GRASP poster sessions. GRASP stands for Guiding Scientists and Advocates to Scientific Partnerships. They pick the big posters or the significant posters. I’m talking [about] an actual poster, a gigantic thing that’s full of words and really, really confusing graphs. 

We have these small groups, and it’s all on Zoom. After each of the big conferences, we have these small groups, where we talk to the poster author, we have a clinician there, and then we have patient advocates. We talk about what is happening in the science. 

Why is this thing important? When I went to the big San Antonio Breast Cancer Symposium in December of 2018, that’s when [everybody was all excited about] Piqray, which I eventually was able to be on.

The future of treatment

At the most recent conference for the American Society of Clinical Oncologists, there was a standing ovation at the news about a medication that just got approved by the FDA recently for treatment of HER2-low, and that’s [the] first one. In the last 5 years, I have seen these drugs that come [that are] the first in their class. 

They’re the first way of identifying and of attacking certain pathways in your body. It’s immunotherapy, where we’re teaching the body how to attack the cancer, which I think is the future. I think that’s the future of precision medicine, teaching our body how to deal with it versus having to stay on this treadmill of medications. 

Being in the room and hearing about these things and just hearing the excitement in terms of that. San Antonio was like 40,000 people that come to this from all over the world. These people have made breast cancer their life, their everything. They are in the lab 24/7 trying to figure these things out. 

One of the really key things that has given me a lot of hope is that there are all these really, really, really smart people who are giving their lives to figure this out, for one reason or another. For most of them, it’s not a profession. It is their life. Seeing that dedication and seeing that energy put towards finding medications…  

Unfortunately, I think breast cancer is too complicated to find a cure, but we are getting so much better at treating different subtypes. People are living so much longer. Like I said, the CDK4/6 inhibitors really changed the landscape. That’s the first line of treatment that everybody gets now, a CDK4/6 inhibitor almost exclusively. 

Patient advocacy

Over the last five years, I have seen how patient advocates can fuel and push research during the time that I’ve been diagnosed. It used to be that if you had brain meds, you couldn’t participate in clinical trials at all. Now, most clinical trials will accept you so long as the brain meds are stable. 

That has been something that has been fueled and pushed by the doctors, but also by patients speaking up and saying, “Hey, wait a minute, you’re excluding me just because of this one thing. Otherwise, I fit perfectly in your trial.” 

I think as a lawyer, I get a lot more of the limitations of our system. There are all these regulations. The drug companies have to fit in this box, which is there for a reason. We don’t want to repeat all of the horrific things that happened in Tuskegee and with all of the things that a lot of doctors did for a long time, especially in minority communities.

The importance of clinical trials

It’s still only about 3 to 5% of us that participate in trials. One area where I try to educate people a lot is the only way that we will have more medication is if people participate in trials. Trials are not for the end. It’s not for when there’s nothing else. I’ve already participated in 4 trials, and none of them have been about medication. 

It’s all been about improving algorithms to look at liquid biopsies, where we can see things in the blood without having to look at a soft tissue met. Actually, the very first genomic testing I had, which was looking at the mutations that the cancer had acquired, was done through a study. 

It’s so important that we participate in this research for the scientists to be able to discover and understand things. The fact that we enroll so few minority populations in these trials means that they’re only testing stuff on middle-aged white women. I am a middle-aged white woman, so I’m happy that they’re testing things on something that most likely would work for me. 

But then how do we know if it is going to work for somebody who’s from the islands or somebody who’s from Africa or somebody who’s from an Asian country? It’s so hard for scientists to be able to tease out all the different specifics about our bodies without having people to test it on.

What are the differences between genetic and genomic testing?

Genetic testing is the stuff that changes in your DNA, so what you get from your parents. Obviously, you get half of your copy from mom, half the copy from dad. Sometimes, if there are DNA mutations on both sides, that creates something entirely different, and they learn so much all the time. 

I do want to say one thing about genetic testing. 23andMe or Color Testing or Ancestry.com is not genetic testing. That’s information that’s available to the public. The genetic testing I’m talking about is through a lab that is FDA approved. You’re not going to get the same information from something that’s like, “Hey, do you have more susceptibility for cholesterol?” That’s different from the genetic mutations that I’m talking about. 

Like I said, now the panel is 93 genes that they’re looking at that have to do with breast cancer. I’m just talking about breast cancer. There are so many different genes that are associated with all kinds of other things. I don’t have mutations anywhere other than in this ATM gene. That has to do with breast cancer, ovarian cancer, prostate cancer and colorectal cancer. That’s the makeup of your DNA. That doesn’t change. That’s static. 

Then the cancer, as it mutates, acquires somatic mutations. That just means in the body. Genomic testing or tissue, with the cancer that they’re looking at under the microscope, gives you the genomic data, and that typically (hopefully) perfectly gives you targets. I talked about the PIK3CA mutation. That’s a target, where we have a medication that targets that.

Using genomic testing to plan for progression

One of the things that came up on my recent genomic testing is that the cancer has acquired the PD-L1 somatic mutation, which is an indication of sensitivity to immunotherapy. This is the knowledge that the doctors have [to use] to then build out options. I always insist that my doctors give me plan A, B, C, D, E, F, G, H, all the way down the alphabet, because I want to know all the different things. 

When there’s the progression and you have to change the medication, if you haven’t already selected or pre-selected some options, it’s chaos. You’re overwhelmed, and you’re having to make really big decisions. I like to make sure that I have the list ready. If there’s a big progression, we’re going to go this way. If there’s a more minor progression, we’re going to go that way. 

That genomic testing can give doctors the building blocks to be able to put together a treatment plan. That’s the science part. I’ve also been so blessed to be with doctors who have been doing this for so long that their clinical knowledge, their gut, because they’ve just absorbed all this data for all these years — and we as individuals are not statistics — that they can look at us and draw on that experience. 

That’s what I call the art of practicing medicine. You have to have both. You have to have the scientific data, the scientific research, the peer-reviewed studies, and the understanding of what kind of side effects you might be experiencing when you’re going into something, But then you also have these doctors who have this more intuitive feel. 

Experimenting with treatment

One of the things that’s happened since I’ve changed teams, since I moved from Miami to Orlando, is a lot of my new doctors are looking at my treatment plans and saying, “Oh, you did things very differently.” And we did. My doctor and I experimented. 

I talked a little bit before about Piqray. I had a PET scan after I had been on Piqray for about 6 months. All the cancer was becoming more metabolically active, meaning I was about to have a progression. We added a third drug. I was on Piqray and on Faslodex, which is the hormone suppressor, and then we added Kisqali, which is another CDK4/6 inhibitor similar to Ibrance. 

There was a study on that particular combination, or an arm of a study on that particular combination, and no one was able to stay on that combination. I was on that combination for 2 and a half years. You don’t know how your body is going to respond until you try. Some people have no side effects on particular medication. 

Piqray is known to cause hyperglycemia, so I was on glucose drugs for the entire time that I was on Piqray. Not a super easy drug, but I got 2 and a half years off of that particular rather aggressive combination. I think one thing that I’ve done in my treatment is that I have not been afraid to try something that may or may not work.

How Treatment Affects Life

Why is Piqray a hard drug to be on, and how did you deal with that?

Hyperglycemia — people mostly associate that with diabetes — can cause a whole lot of things in your body. There’s a rash that Piqray often causes as well. You have an allergic response to it, but hyperglycemia is probably the biggest thing. Pricking my finger every day and having to be on medication to manage the hyperglycemia. 

That is probably the biggest challenge that most people face on Piqray, especially just because hyperglycemia is one of those things that affects your whole body. It affects everything. Managing the hyperglycemia can actually be a really, really big lift. 

Oncologists go to school for oncology. They don’t go to school to manage hyperglycemia. The endocrinologists know how to treat diabetes, but it’s not diabetes. It’s medication-induced hyperglycemia. People were finding themselves in this very big gray area. 

I’m extremely proud to say that I’ve been working with Novartis, who is the drug company that produces Piqray. Anyway, we have a poster coming out at the ASCO session that’s coming up, and it’s all about teaching the doctors how to manage the hyperglycemia. Literally, you have a patient that comes in with this, do this. If a patient comes in with that, do this. [It has] preferred drugs and dosages and everything like that. 

This has been a huge labor of love in a lot of ways. I’m the only patient advocate on the panel. I think there were 12 or 15 doctors, endocrinologists and a medical oncologist. We had a pharmacist. That’s probably one of the most amazing things I’ve ever done, because I brought the patient experience to the table. 

Plus, I moderate a Facebook group for people on Piqray, and we have hundreds of people in the group. I was able to do some polling of the people in the group to bring some real-time data to these discussions. This is where patients can help educate, because all the doctors on this panel are all at major academic centers. The vast majority of people being treated for cancer are in rural settings, not a major academic center.

Some of the doctors that treat you in the community are not maybe a breast specialist. You may see an endocrinologist who’s not an oncology endocrinologist or [doesn’t have] some of that specific training or experience. 

The doctors didn’t know what to do, and that was such a huge issue for so many patients that Novartis put their money where their mouth is and invested in coming up with these guidelines [from] discussion and consensus among all the different specialties. 

Yes, I was very proud to participate in that, and part of it was because I was harassing Novartis about all the things that people were talking about in the group and referring them to the patient advocacy program. Their doctors were trying to figure things out. I think they finally said, “I think we need to give this person a job.”

Treatment affecting quality of life

Grade 3 diarrhea means you’re in the bathroom like 10 times a day. If you’re only doing that for a couple of days, okay. You deal with it, maybe take some medication, whatever. Then the rest of the time between treatments is not so bad. 

The difference with these oral meds is that that’s the side effect that you have every day, 24/7, for all the time that you’re on the drug. I have seen a shift in the last 5 years of researchers really beginning to understand that. You start looking at it really closely when it’s about grade 3. Grade 5 is death, just to put it in perspective. 

They’re paying a lot more attention to that and understanding that with these oral meds, you can’t live if you’re in the bathroom 10 times a day. We talk to people about literally not being able to make it to the bathroom. As an adult, actually having an accident is not something that is okay. 

We had several advocates talk about, “I think I need to wear a diaper to go to the conference because I don’t know if I’m going be able to get to the bathroom in time.” That’s the kind of quality of life stuff that I am seeing be much more focused on, thank God. Not that they didn’t want to, but I think that they needed the push, and I think they needed incentives. I’m also seeing much more of the patient voice being included in these trials. 

Designing trials with patient input

The piece that I think needs to change is getting the patient advocates involved at the time of the design of the trial. So many times the trials are designed in such a way, whether it’s transportation or parking or having to be at the doctor 3 times a week. There are things that they design that make sense to them from a gathering data perspective. It’s just not livable. 

This idea is of having trials where you don’t have to go to one place or don’t have to go to the major academic center. Maybe there’s more places, or you can get blood work yourself and bring it. COVID has helped this, too. 

They’re becoming much more aware. There are things we can relax in terms of the structure that are not meaningful overall, but it means everything to the patient. That’s huge, getting the patients in at the beginning.

HER2-low medication approval and its impact

Everybody has HER2. It’s a biomarker that everybody has. For some people who are HER2-positive, it is overexpressed. When I talked about how estrogen is the strongest receptor for people who are HER2-positive, that’s the receptor to target. 

Herceptin has been out 15, 20 years now. That was a game changer for people who are HER2-positive because that HER2-positive overexpression means that the cancer was so much more aggressive. The life expectancy of somebody who was HER2-positive was very low. 

That is about 25%-ish of the total breast cancer diagnoses, so it’s a pretty significant group. About a fourth of people are diagnosed HER2-positive. It used to be negative or positive. You either had an overexpression, which would be 6 plus, or you were zero. 

But then they started seeing that those of us — because I’m now HER2-low in my last genomic testing — that there can be zero, or you can be in this 2 to 3 category, meaning you have some HER2 expression, but it’s not overexpressed. 

Because Herceptin was such a huge game changer, a lot of the research started looking at maybe that type. If you look at your cell, you’ve got receptors, and they’re like little antennae. They’re looking for the thing that will feed them. 

What Herceptin does is it blocks that receptor and says, “Nope, you can’t get in.” Once there’s something that blocks that receptor, it’s no longer able to help fuel the cancer or help the cancer proliferate. That is my very non-scientific explanation. 

Antibody-drug conjugates

Because Herceptin was such a game changer, there’s been a lot of people who have been starting to look at that thought process of targeting that particular receptor. Maybe that would be helpful [to focus on] the people who have a smaller expression of HER2, not quite to the 6 plus. That’s where Enhertu came from. 

Enhertu is an ADC, which is an [antibody]-drug conjugate. That’s the new class. The antibody-drug conjugates is the new thing that everybody is super excited about, because it is a chemotherapy in the sense that you get it through an IV, but it is targeted like an oral so that you theoretically don’t have so many of the side effects. It goes to the cancer versus just killing all the active cells. 

Adriamycin, taxane, Taxol and Abraxane kill all the good cells and the bad cells at the same time, anything that’s fast growing. My hair is growing back. I just finished Taxol here in May. That’s why you lose your hair, because your hair is a fast-growing area of your body. So is all the good bacteria in your gut. There are so many things. Your white blood cells and your bone marrow are affected because it just carpet bombs your body. 

Being able to be more targeted, you don’t have the same overall effect. Theoretically, you don’t have the terrible blood counts, and you don’t have all of the other side effects that come along with chemo, like nausea and everything else. 

I’m not saying Enhertu is an easy drug, because I know quite a few people who have really struggled on Enhertu. Everybody’s different, and you don’t know how your body is going to react until you’re on it.

Cumulative effect of treatment

When you’ve had multiple lines of treatment, your body just gets depleted. I’m on my fourth line of treatment right now in 5 years, and that’s partially because I had multiple progressions here recently and had to change medications quickly. Once your body has been what they call heavily pretreated, your body just doesn’t respond as well. 

Those of us who are younger, sometimes we’re able to handle some of the harsher medications. It’s a double-edged sword because our immune systems are actually better, and it takes a little while for your body to adjust to some of the immunosuppressive activity of some of the medications. 

We just did an amazing presentation from Paolo Tarantino, who is at Dana-Farber in Boston, on what HER2-low means. He did a whole hour and had these amazing slides. That is something that’s available through Project Life. I’m still wrapping my head around it. He talked for like 20 minutes, and my brain started hurting.

Reflections

What is your last message to others?

When I was practicing law, I always told my clients they brought the facts, I brought the law, and we couldn’t do the case by ourselves. We had to do it together. That’s the thing that I think we all have to look at with our team. We’re on the team, because our doctors have no idea what’s going on at home. 

They don’t live in our bodies. Many of the things that we deal with on a day-to-day basis, they had a day or an hour or a little bit of continuing education about. Really understanding that when we walk into our doctor’s office, we are there to be a partner with them. We need to be an active partner in that. 

My husband, as a minority, as a black man, he’s always more worried than I am about asking questions, speaking up and challenging the doctors. I obviously have no problem with that. I think that you don’t have to do it in an aggressive or in a challenging-type way, although sometimes I get that way with my doctors. 

»MORE: How to be a self-advocate as a patient

Understanding that they don’t know what they don’t know, that you know the things. You’re an expert in your body. You bring your body to the table. They bring the scientific knowledge, plus that experiential art piece. It doesn’t work if you’re not telling your doctor what’s going on and if you’re not saying, “That doesn’t work for me,” when they run over you, as so many doctors do.

Being an active part of the team

In our support groups, we often talk to each other about, “Ask your doctor this. Ask your doctor that.” I think a secondary thing would be making friends in the community who can help coach you on the questions that you’re not even seeing. It can be huge. 

There are all kinds of people where research advocacy is their lifeblood, their thing. They’re not doing this alone. The whole idea of no man is an island, right? We cannot do this thing by ourselves. As just a consumer, we can’t just receive what the doctors are saying. We have to be active in that discussion or in that partnership. 

I think doctors are getting better about that. They’re not always great about that, but they are getting better and understanding that we patients have the same access to clinicaltrials.gov, and we have the same access to the papers and all of that, as long as they’re not behind a paywall. 

We have access to those things, and we can read. We can bring in things and say, “Well, hey, what about this?” or “I heard this thing in a seminar.” That is what gives me, again, a little bit back of that sense of control, as well as the hope of, “I’m going to take some responsibility for this.” 

This is also on me. It’s not just on my doctors, in terms of them figuring out what happens next. I’m going to take some of that responsibility, because that makes me feel empowered. That makes me feel more of an active member of the team.

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Cat’s Stage 2B IDC & DCIS, ER+ Breast Cancer Story

Cat’s Stage 2B IDC & DCIS, ER+ Breast Cancer Story

Cat shares her story of stage 2B breast cancer, getting diagnosed after feeling a lump in her left breast. She details how she got through a bilateral mastectomy, chemotherapy, hormone therapy, and recovery.

Cat also highlights how she managed hair loss, what support was most helpful to her, and how she dealt with parenting while going through cancer.

  • Name: Cat L.
  • Diagnosis (DX):
    • Breast cancer
    • Invasive ductal carcinoma & ductal carcinoma in situ
    • ER+, PR/HER2- in left breast
  • Age at DX: 33
  • Staging: 2B
  • 1st Symptoms:
    • Lump in left breast (actually turned out to be 2 that were close together)
  • Treatment:

The biggest thing you can do for me in this process is don’t ‘at least’ me. That means no, ‘Okay. At least you’re stage 2 and not 4. At least you’re alive. At least…’

That drives disconnection.

You don’t have to have magic words. You don’t have to try to fix it. You can’t. You can just say, ‘Dang, that’s really hard.’

Cat L.
Table Of Contents
  1. Diagnosis
  2. Mastectomy
  3. Chemotherapy
  4. More Treatment
  5. Support & Emotions

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Diagnosis

What were your first symptoms?

I started to get a bunch of pain in my left breast. I had pretty fibrous breasts before all this. I would find little lumps here and there, but this one was huge. It was about 7 or 8 cm. I was getting pain radiating from the center of it. When I felt it, there was clearly a lump. 

My boyfriend at the time felt it as well and told me I should go get checked out. 

How did you get diagnosed?

At first, I went to Planned Parenthood, and she referred me to an ultrasound place. I went there, and the guy there said, ‘I can’t diagnose you with cancer, but it really doesn’t look great.’

He took me back and showed me what it looked like. He sent me to a biopsy place, where they did a biopsy on the left breast in my lump and on the right breast as well, because I had little calcifications in my right side. 

How did you process the news of cancer?

I don’t remember the moment I was diagnosed, but I remember the moment after the ultrasound. I knew then that I had cancer.

He didn’t diagnose me obviously, but he said, “This is what cancer looks like.” I got out of that ultrasound and just started crying. I was a mess the whole way home. 

»MORE: Patients share how they processed a cancer diagnosis

Describe the biopsy

That was not something I was prepared for. I thought they were just going to numb me real quick, go in with a tiny needle, and be done.

I had brought my 40-pound bag of school books and stuff because I was in school and was going to study while I waited. They told me I wouldn’t be able to carry that to my car. I also had to go pick up my kid later, and they told me I wouldn’t be able to lift her. 

I went back, and they put needles in my left and right breast to try to numb them. They have this big needle that’s hollow. It pulls out a piece of the biopsy.

The first pass was okay, but by the second one, I wasn’t numb anymore. I felt the second one, and I was in a lot of pain. They quickly stopped and gave me more numbing medicine. 

Then they took me back, and I had to lay on my left breast, which was in a lot of pain. I had to lay flat on this machine while they dangled my right breast down.

You’re on this machine, and your breast is in this little hollow cavity in the machine. They went in with a needle from the side after they had numbed it again. After that, I had to get up and do a mammogram. 

They had someone behind me, and I fainted during the left one because it hurt so bad. They lifted my bag to my car for me. People had offered to come with me, but I was like, “No, I’ll be fine.” I didn’t know it was going to be that big of a deal. 

Mastectomy

How was the meeting with the surgeon?

I met with my breast surgeon and plastic surgeon. I hadn’t met with my oncologist yet because I didn’t need radiation or chemo before surgery.

I got diagnosed at the end of June, and I went on a trip for 2 weeks in July to see my family. They said it would be fine if we waited. I didn’t want to schedule my surgery until I was done with my summer semester in school, so we waited until August for that.

What made you decide to do a bilateral mastectomy?

I had a choice. I could keep my right breast and nipple, but I couldn’t keep either on my left side. The whole thing had to go.

I decided to get the full mastectomy because I had breastfed before, and it was going to be impossible to recreate the shape of my right breast with an implant because it was much lower and not round. I was worried about it because of the calcifications, too, so I got the full bilateral surgery on August 1, 2018. 

What was the preparation for the mastectomy?

The preparation was having to go buy Hibiclens. It’s a special soap you use all over your body, especially on your chest, for the whole week before. 

The prep for the surgery was really just a lot of mental prep, though. My boyfriend and I went on an 8-mile hike the week before.

We took really pretty pictures and just did life. I thought then that I was just going to get a bilateral mastectomy and be done. I thought I’d get a free boob job and be done with it. 

The day of the surgery, my stepmom flew out. She got me special t-shirts, and we went to the hospital. My stepmom, my ex-boyfriend, and my boyfriend all went back with me, which was super awkward, too. My stepmom and boyfriend ended up staying in the room with me. 

The anesthesiologist came in, and I decided to get a pain block. It’s kind of like an epidural for your upper body. I got that done right before surgery, and it was painful, so of course I passed out. 

How did the surgery go?

Surgery was very successful. They got all of my breast tissue. They took some lymph nodes from my left side, too, so they could biopsy those. 

They found out I actually had 2 separate tumors. The invasive ductal carcinoma was 5 cm, and the in situ was 3 cm. I was a combination type. I didn’t find that out until after the surgery.

I also had expanders put in during the surgery, and once a week, my surgeon would fill them with fluid. They weren’t painful, but they were uncomfortable.

How was the recovery in the hospital?

The hospital recovery was really rough. Again, I don’t handle pain really well. I had one of those plastic beds that’s supposed to make sure you don’t get bed sores, but I was only in the hospital for one night. I kept slipping down the bed, and you can’t use your chest muscles after surgery. 

They kept telling me to use my stomach muscles, but it kept spreading up to my chest, so I couldn’t sit up on my own. My stepmom stayed on the couch in the hospital room with me and put her arms behind my back so that I could just sit up. 

I fell asleep at 8 p.m., and they didn’t wake me up to give me painkillers. When I woke up in the morning, I was screaming because it hurt so bad. I didn’t feel like the nurses did a great job. I don’t remember much else other than that.

How was recovery at home?

Recovery at home was rough, too. I had drainage tubes on each side. My left side tubs were more painful than even the stitches I had across my chest. I had about a week or so recovery at home. My stepmom took care of me. 

We would call my plastic surgeon because I was just in so much pain. He would ask us to send pictures, and he said it looked normal. I ended up back in the hospital because I was in so much pain.

I recently found out that my stitches, which are supposed to create a hammock for your breast, just didn’t heal properly. Recovery for me took about 2 or 3 weeks in total. It was a slow process. 

Chemotherapy

How did you find out you needed chemo?

We got my oncotype back for my tumor, and the oncologist said I had a 16% chance of getting an incurable type of cancer, which seems kind of low, but the general population has a 2 or 3% chance. 

She gave me some options. I opted to do chemo for 4 months. I don’t remember which drugs I got because I was out of it at that point and was scared and sad. I didn’t know I was going to need chemo. That was hard. My boyfriend and I both cried.

What were the chemo infusions like?

I wore my chemo crown, which was a woven, golden crown, and my chemo shirts to each infusion. The first time I went, I had all my hair, and I felt fine that whole day. Then I went home, and they had given me a pack of Neulasta. It increases your white blood cell counts. 

After that is when I started to go downhill. I got really really sick. I was throwing up, I was dehydrated, and the bone pain was so bad. I gave birth naturally by choice, and it was worse than that.

It felt like my hips were expanding and my bones were breaking. That week, we were in and out of the hospital maybe 10 times.

For the chemo infusions after that, they halved my dose of Neulasta. The infusions themselves were always really pleasant. It was open, and there were other people you could talk to.

Volunteers walked around with snacks. It was hard, though, because I was always the youngest one there. There was never anybody my age. 

Even with the reduced dosage of Neulasta and switching to the infusion, I still had a horrible reaction. It wasn’t as bad as it had been, but I still had to be in the hospital.

Describe the hair loss

After that, my hair started to just come out in clumps. My boyfriend was out of town that week. My ex-husband came over, and we shaved my head as a family that night with my kid.

We shaved it into a mullet first and stuff like that. We went out to dinner, and then I went home. My boyfriend came home and brought me a wig. He would wear it during my chemo treatments and make people laugh.

Describe experiencing the hair loss

Hair loss wasn’t emotional for me at first. It was just another thing I knew was coming and that I had to do. The thing that gave me anxiety was seeing clumps just come out. Being able to grab my hair and just have it come out was so strange. 

After a while, it started to wear on me because people could tell I was sick. I was really tired of people being able to tell I was sick.

The loss of my eyebrows and eyelashes was incredibly rough. I didn’t have to shave my legs, though, so that was nice!

»MORE: Dealing with hair loss during cancer treatment

More Treatment

You had the exchange surgery next

The exchange surgery went really well. I didn’t have to have drainage tubes. It was so much easier than getting my breast tissue removed. 

The expanders would turn and move, and they were so uncomfortable. The surgery corrected that, and I finally had implants.

I still struggled to do stuff, and it was frustrating. I got really depressed during that time because at that point, I just wanted to get back to my life. It went really well, but emotionally, it was tough. 

You started tamoxifen

Tamoxifen suppresses your estrogen, and it’s just a pill you take. My tumor was ER+, so I started that after the exchange surgery. I didn’t need radiation, so that was good, but tamoxifen was very rough.

I went into menopause. I had bad hot flashes and crazy mood swings. I didn’t really notice it a whole lot because I had my exchange surgery around that time, too. 

I was on tamoxifen for about 11 months. I started to get really bad suicidal ideation. I couldn’t get out of bed, shower, or do anything. I went off of it for a month, and I felt so much better.

They put me back on it, and I was having the same problems. I went to the hospital and told them, “I’m not going to do anything, but this is happening.”

They took me off of it immediately, and currently I’m not on anything. I feel more like myself.

You have post-mastectomy chronic pain syndrome

In May of 2019, I had a fat transfer surgery. That was my last surgery. They took fat from my stomach and put it up top to just kind of shape things out. I couldn’t get it done during the exchange surgery because I lost too much blood, so they waited until May. 

After that surgery, right where my left drain had been, I started to get extreme spiderweb pain across that portion of my body. I ended up in the hospital again. I’ve been to the hospital for that about 5 times. I had a doctor basically tell me I was a pain pill addict at one point. 

I went and saw my plastic surgeon in November of 2019, and he said I have post-mastectomy chronic pain syndrome. I’ve done acupuncture, chiropractic care, yoga, massage, and it’s just still not getting better.

I went and saw my oncologist, and she referred me to a different plastic surgeon. She started me on an ibuprofen regimen, and I’m supposed to get PT/OT soon because I’m getting frozen shoulder syndrome from it now. 

I have a consultation for a stellate ganglion block soon. It’s basically like an epidural for your neck and shoulders. I’ll get that done hopefully soon. It’s still a relatively new procedure, but I hope it’ll work for me.

Support & Emotions

Can you talk about your support system?

My biggest supporter was my boyfriend, who is now my fiancé. We met at a brewery a few months before I got diagnosed.

Our dogs got tangled up, and we started talking. He, without knowing me super well, took care of me. I stayed at his house. He flew my family out, cooked, cleaned, and supported me all while working a full-time job and traveling for work. 

My ex-husband was a very good support as well. He took my daughter for a good 80-90% of the time during my chemo because I couldn’t care for her myself. 

My stepmom and dad both traded places coming out for that entire period of time. My best friend came out for a whole week and took care of me, too.

Without them, I would’ve been in an assisted living facility because I just could not take care of myself. I couldn’t do it alone. They were invaluable to me. Emotionally, I don’t know what would’ve happened to me without them.

I’m also part of a group called The Breasties. I’m an ambassador for them now, and they were a great support, too. It’s been so important to have that. Because I’m so young, it’s very difficult to find people my age who understand chronic disease.

The women truly understand what I’m going through, and that’s amazing. 

Do you have advice for people who want to help but don’t know how?

The biggest thing for me was “at leasting.” I got it from Brené Brown. She has this video on empathy vs. sympathy. I made all my caregivers watch this video.

I said, “The biggest thing you can do for me in this process is don’t ‘at least’ me. That means no, ‘Okay. At least you’re stage 2 and not 4. At least you’re alive. At least…’” That drives disconnection. 

You don’t have to have magic words. You don’t have to try to fix it. You can’t. You can just say, ‘Dang, that’s really hard.’

Connect with yourself and how you feel when you’re at your worst, and understand that that’s how the patient is feeling.

Sometimes somebody just needs you to validate their feelings and for you to just cry with them.

How has cancer affected your relationship with your fiancé?

We already communicated really well. We work really well together. We talk about everything. It was very difficult, though. We had known each other for 2 months, so he went from an equal partner to a caregiver.

It wasn’t sexy. He stuck with it, though, and loved me so much. I still gave him love in ways I could. 

After we were done with chemo, which was the hardest part, we said, ‘We need to connect.’

We traveled. We went to Washington, Little Rock, and we went to see both our families. We went camping, hiking, biking, and to New York. We just got back from Costa Rica. Travel has been a great way for us to connect and get to know each other.

»MORE:  What kind of support cancer patients say helped the most

What’s it like being a parent with cancer?

It’s incredibly difficult. When I was diagnosed, I thought about what letters I would write to her if I wasn’t here. I wanted to write her a letter for the day she went to college, got married, or had a baby. I wrote all those in my head. 

Once you’re done with it, you think you’ll be done, but you’re never done. For her, she knows what chemotherapy was. She was allowed to wash her hands, touch my breasts, and see them the whole time.

I didn’t hide it from her because I didn’t want it to be mysterious. She does get confused, and she sometimes thinks that everyone has to get chemo when they get older. 

My ex-husband would bring her over and let her sleep over, and he would sleep on the couch and take care of us. It was really sweet. 

»MORE: Parents describe how they handled cancer with their kids

What’s your “new normal”?

I want life to hurry up. It’s very much rushed in my head. Before my boyfriend proposed, I was very upset that he hadn’t. It just feels like there’s not much time left.

My new normal is being so happy that I’m cancer-free right now (as far as I know), but I’m also always on the lookout and preparing myself for the day when they say it’s back. 

It’s both amazing and awful at the same time. It’s amazing that the first time I was able to run in the woods after all this, it felt like the first time I’d ever run before. That part is incredible. I’m able to see the world through new eyes. Everything is more beautiful and heightened. It’s also stressful, though, because you never know if it’s going to come back again.

How do you manage the fear of recurrence?

I exercise a lot. I do HIIT classes, boot camp classes, barre, and I mountain bike. I go to therapy once a week as well.

I talk with my fiancé about it when I’m feeling upset. I call him and my family and talk. I meditate every morning and night. If I need a day to just not do anything, I just take it. 

What advice do you have for someone who has just been diagnosed?

Ride the waves. Ride the emotional waves and talk. Talk to anyone and everyone you can about it, because you need to get those feelings out. You can’t bottle them up.

Thanks for sharing your story with us, Cat!

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Combination Type Breast Cancer Stories

Natalie
Natalie W., DCIS, Stage 0, ER+; Paget’s Disease



Symptom: Lump in right breast

Treatments: Lumpectomy, double subcutaneous mastectomy, hormone therapy (tamoxifen)
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Symptoms: Pain in left breast, left nipple inverting

Treatments: Double mastectomy, chemotherapy (AC-T), radiation
Tina C., DCIS & LCIS, Stage 3A, ER+



Symptom: Sunken in nipple of right breast

Treatments: Double mastectomy, chemotherapy (AC-T), radiation, hormone therapy (tamoxifen, Zoladex)

Cat L., IDC & DCIS, Stage 2B, ER+



Symptom: Pain in left breast radiating from lump

Treatments: Bilateral mastectomy, chemotherapy, hormone therapy (tamoxifen)
LaShae R.

LaShae R., IDC & DCIS, Stage 2B, ER+



Symptoms: Lump in breast, pain
Treatments: Chemotherapy (Taxotere and cyclophosphamide), proton radiation
Categories
AC-T Adriamycin (doxorubicin) Breast Cancer Combination Types Cytoxan (cyclophosphamide) Mastectomy Radiation Therapy tamoxifen Taxol (paclitaxel) Zoladex (goserelin)

Tina’s Stage 3A ER+ Invasive & Lobular Breast Cancer Story

Tina’s Stage 3A ER+ Invasive & Lobular Breast Cancer Story

Tina shares her in-depth story on getting diagnosed with stage 3A breast cancer after noticing a sunken nipple. She details undergoing a double mastectomy, chemotherapy, radiation, and hormone therapy.

Tina also highlights how she managed through the trauma of losing her hair, dealing with work and finances through treatment, and the importance of self-advocacy as a patient.

Table Of Contents
  1. Diagnosis
  2. Treatment Decisions
  3. Surgery (Double Mastectomy)
  4. Chemotherapy
  5. Reconstruction Surgery
  6. Radiation Therapy
  7. Hormone Therapy
  8. Hair Loss
  9. Work & Finances
  10. Support & Care
  11. Survivorship

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

It’s definitely a roller coaster. There’s going to be ups, and there’s going to be downs. In some ways, you’ll appreciate the journey. Looking at it on the other side is just totally different. It’s amazing, and you just appreciate more, but it’s not easy.

You have to talk to somebody if you find yourself just staying in a down place. You need to.

Tina C.

Diagnosis

What were your first symptoms?

I remember at my wedding thinking something just seemed a little different with my breast. That was in April of 2013.

The nipple on the right side had sunken in a little. I thought, “Oh, that’s odd or strange,” but I really thought, “Oh, getting old sucks,” even though I was 37.

In my mind, it didn’t really click, even though my mom has had breast cancer 2 times. It was always a lump, so I just ruled it out for a little while.

Another couple of months passed. Something happened with someone at work, totally unrelated to breast cancer, but it just made me take inventory of my own health.

I was like, “You know what? This hasn’t changed with my breast. I don’t know what’s going on, so I’m just going to go have a talk with my OB-GYN.”

Describe that first primary care visit

I went in about June and had a conversation with her. She said, “It’s probably nothing, but let’s just get it checked out.”

I had a mammogram when I was 30, and I had one when I was 33, so I had a pretty good baseline at that point in time.

She scheduled my mammogram pretty soon thereafter. I went in and got the mammogram. It seemed normal, so everything seemed to go the way it had in the past, except I got a call back about another week or so after the mammogram that something was abnormal and that I needed to come in. That was definitely unique to what had happened in my previous mammograms.

Differences during this mammogram

For the second mammogram, my husband went in with me. From there, they did an ultrasound. They had never done an ultrasound before.

They were spending a lot of time in my armpit area, which I knew enough about my mom’s diagnosis to know that that’s where your lymph nodes are. Something’s obviously unusual.

They wouldn’t tell me anything while I was lying there, so I had to wait until the doctor could come and officially read it. He came in and said, “Well, I know you know something’s not right.”

They needed to do a biopsy. I could choose to either do a needle biopsy or meet up with a surgeon and have a surgical biopsy.

Because of my mom’s history, I did choose to meet with a surgeon and go that route. From there, I did do the biopsy. I think that was in probably late July.

From that biopsy, I woke up to my breast surgeon telling me, “I think you need to get your mom’s records.” That was the first thing I woke up and heard.

That was on a Thursday. I took Friday as a mental day. Then on Monday, I got the official diagnosis that it was cancer.

It moved quickly to a diagnosis

It escalated pretty quickly. It was good that everyone took me very seriously, even though I was 37.

I think that me having my mom’s diagnosis gave me some credibility. Nobody second guessed what I wanted to do. Everyone was very obliging of what I needed to do.

Describe the mammogram

The mammogram was just a normal mammogram, where it squeezes one breast at a time. I’m not very large-chested, so I never had any pain or any issue.

Nobody really reads you the results right then and there. Certain clinics have different procedures, but the one I was at, they definitely waited. Your actual doctor talked to you about it, or sometimes you get the thing in the mail later that everything was okay.

The ultrasound was a wand going back and forth, back and forth. They were looking at the breast with the wand, but they were spending a lot of time in my underarm area. Then another person would come in.

I think the hardest part was nobody would talk to me, so it was really frustrating. I’m a human being sitting here. Can’t you at least just tell me what is going on?

I understand that there’s procedures. Different people read different things, and only certain people can also tell you what’s happening. I was not naïve enough on this case to know that there was probably a problem.

It felt very frustrating to lie there. I remember lying there with the ultrasound wand and just having a tear go down my face because I knew something was happening, but nobody would talk to me.

»MORE: How to be a self-advocate as a patient

Describe the biopsy

It actually ended up being almost a lumpectomy because when she got in there, she could definitely tell things weren’t right. She took more than what a tiny needle biopsy would’ve done. It is almost like she performed a lumpectomy and tried to take the surrounding tissue as well.

It wasn’t very painful, and my recovery wasn’t very hard. It was the tip of the iceberg, so emotionally it was very hard and very difficult, but physically it wasn’t that big of a deal.

I’ve had so many surgeries. I think it was just local [anesthesia], and I went home later. It was an in and out. Obviously, the mastectomy is totally, totally different.

I had some bandages and dressing to change. I remember more the emotion than I remember the physical part of it.

What do you remember most of the biopsy?

Just to hear, “Get your mom’s records,” was truly, truly eye-opening. I always felt in my heart that me getting breast cancer was definitely possible, but my mom was 46 when she was diagnosed. I never in my wildest dreams thought I would be in my 30s. I don’t know why. I just thought that seemed crazy.

I thought if it would happen to me, it would happen later in my life. My mom did get her records in order and get everything sent over. I spent the weekend calling everyone that I loved and telling them, “Hey, this is likely going to happen.”

It was very emotional, but it did allow me to  process it with a bunch of people a little bit before I even heard the official diagnosis.

How was the wait for test and biopsy results (“scanxiety“)?

Each was probably a couple weeks. It seemed the wait got shorter the more engrossed it was. From the first mammogram to the second mammogram, it was probably a couple weeks.

Each thing just seemed to take some amount of time. It was probably 6 to 7 weeks from that point to get the full diagnosis. I had my biopsy on a Thursday. I got my official diagnosis the following Monday that it was cancer. By the end, things were moving rather rapidly.

»MORE: Dealing with scanxiety and waiting for results

How did you deal with the wait for answers?

I tried to just live my normal life. I had been promoted in February of that year, so I had still a relatively new job. I really just tried to immerse myself in work and my life. Not trying to worry about it so much, but then everything had to change once it became a cancer diagnosis.

Leading up to that point, I felt like I just tried to — I don’t want to say ignore it, but just tried to remain calm and just be myself as much as I could.

Describe the moment you got “the call”

I’m sure my story’s not too unique to anyone else’s. Even with having the doctor tell me on Thursday that, “Hey, get your mom’s records,” there’s still just this glimmer of hope that everything is for some reason going to be okay and not a cancer diagnosis.

I went back to work on Monday. I think I got the call 3:30, 4:00 in the afternoon from the doctor. I walked away from my desk. I remember them saying, “You have cancer.”

It’s just the hardest thing. The whole world stops. Everything that you felt and hoped and wanted to do — just everything just suddenly changes.

I often say it’s just a line that’s drawn. You can never go back to that pre-period. It’s just different from that point forward, so life as I knew it definitely changed. For the next year, everything definitely changed.

It is that raw emotion. It just really comes back and takes you back to that very day that you found out.

»MORE: Processing a cancer diagnosis

How did you break the news to loved ones?

My husband actually worked at the same place as I did, so I emailed him and was like, “Hey, we’ve got to go.” I’m sure he knew at that point.

Plus, everything leading up to it. In the car I was able to just be sad and let it all out. I waited to tell everyone at work maybe a week, just to give myself some time to process it.

We actually set up a meeting. I had a good discussion with my boss. At that time I was leading a team of about 10 people, so we invited the whole division basically. My boss framed it up like, “Hey, we are a family, and sometimes families go through tough times.”

It was good to have their support from the very beginning, understand what was happening, and to hear it more from me and not hear it just through the grapevine.

I’m definitely more of an honest person who’s just going to tell you what’s happening. Let’s find the best way to treat it and to move on.

I think it was probably the hardest for my mom. She was living in Michigan, and I was living in Chicago suburbs at the time. For her to be 7.5 hours away, she definitely felt a lot of guilt.

She felt like she caused it or it was because of her genetics or something. She had a really hard time dealing with it at the beginning.

I remember one of my aunts who lives in the same hometown emailed me and said, “Your mom is really not taking this well. She’s blaming herself. She’s just not doing good.”

I called her, “Hey, I heard that you’re not taking this well [and] that you’re blaming yourself.” She’s like, “Yeah.” She got really quiet.

“Well, I can’t worry about you doing this. I don’t blame you.” I told her I didn’t blame God. I just told her, “Hey, we just have to deal with this. We just have to move forward and deal with this.”

I released her of those feelings. She could come to terms with it. [She] just supported me in the best way that she could from that point forward.

She couldn’t obviously make it to everything, but she came and stayed with me for a week during my mastectomy and my first chemo. Definitely, she was the hardest one to break it to, outside of my husband.

»MORE: Breaking the news of a diagnosis to loved ones

Do you remember how your oncologist described to you what 3A estrogen positive means?

I tried to negotiate with him.

Tina: How about 2C? There’s not a lot of difference between 2C and 3A.

Oncologist: No, it’s really 3A.

Tina: Yeah, but 2C just sounds so much better.

I remember having that conversation with him, but the size of the lobular mass that I had [was bigger]. I also had ductal cancer. It is crazy that I had 2 kinds of breast cancer.

I don’t even have the same cancer that my mom had, which is even crazier. That was very interesting to learn. My mom had triple negative; that’s a very tough type to have, and it’s usually very ferocious.

Mine is some blessing. I had multiple conversations, I remember, talking to my breast surgeon.

Tina: Well, is this a better kind to have then?

Breast Surgeon: The fact that there is a treatment that after chemo can help you, then yes. That is the better thing.

We had our conversations about it, and the fact that mine is hormone receptive — there are drugs that can help me post-treatment — was a good thing to have and to understand, even though that drug for many people comes with a lot of side effects.

You had both lobular and ductal carcinoma in situ

Yes. Lobular is like spider-web crazy, and that’s actually what pulled the nipple in. Ductal was more like a lump in the ductal gland. That’s the kind my mom had.

Ductal typically forms a lump, but the lobular is just this mass of a spider web, and it’s just messy random things growing together. Both were on that same right breast.

Treatment Decisions

Did you get a second opinion?

I think they were still staging it at that point in time. With the fact that I had a surgeon, it wasn’t just some needle biopsy, and that she got in there and clearly could see something — I guess I felt that this with my mom’s prior history, too, that we just need to move forward.

I was pretty clear with my surgeon from the beginning, like, ‘Hey, if this is going south, I want a double mastectomy. That’s just what I want.’ She was always very accommodating of what I felt I needed.

How did you find your oncologist, surgeon, and radiation oncologist?

I lucked out. I just felt most all my surgeons fell into place. It seems my OB-GYN had worked very closely with the breast surgeon that I had, and I really her. She worked very closely with a plastic surgeon. He was really great to work with for reconstruction.

She also was familiar with an oncologist, so that’s how I got in touch with him. They were all in the same network or same hospital, because they all shared the same operating rooms and different things.

The only one that I bucked the trend on was my radiation person. After a consultation, my husband was, “No. I’m not allowing it.” I just had this feeling, and then he verbalized what I felt. He was just like, “No, we’re going to get somebody else.”

How did you decide who to go to for treatment?

I’ve talked to other survivors, and it’s amazing. I always say, “Listen to your gut.” You want a smart person, and you want someone very capable. You do want good bedside manner. I’m not saying that’s most important, but you do want some good bedside manner.

[The first surgeon] took 2 personal calls during my consultation, left me with an iPad, and said, “It’s this, but it’s not.” I was like, “Well, what part is that? What part is not?”

I was also like, “If you can take 2 personal calls to an appointment that means the world to me, then I don’t think it means the world to you.” I think you just have to find a doctor that you feel is as invested in this, in your cancer journey, as you are.

If you don’t have that feeling, you should get a second opinion. You should talk to somebody else. There’s always options.

They might not be as convenient, but you should always look into options if you don’t have the feeling that they’re on your team.

Describe the treatment center you went to

It was fairly newer and fairly mid-size probably. It was part of Advocate Hospital, which was a bigger network in Chicago, but it was one of the outlets for it.

What did you like about it?

I would definitely say for me it was convenient. I don’t feel people should just make a choice based off of conveniency, but it was convenient to get to for still trying to work and still trying to have some normalcy to life.

I knew other people who would go downtown Chicago from the suburbs, but you’re talking maybe a 2-hour drive there, 2-hour drive back with traffic, depending on the time of day. It was on my way home from work. I could schedule things easier with my lifestyle.

I actually felt the caliber of doctors was amazing, the people that I had. I don’t know if I just lucked out with the team that I got, but once I had that team, I really felt they were a dream team. They just all gave me such great advice. They even advocated for me.

I ended up taking a medical leave at one point in time because my oncologist asked me tough questions, and I needed it.

Oncologist: Who’s your advocate at work?
Tina: My manager. She cares about me.
Oncologist: No, no, no, no. I’m not talking about caring. Who is your advocate at work?
Tina: I don’t have one.
Oncologist: Well, then I really need you to consider taking a medical leave.

He just put it in very black-and-white terms that I needed to hear. He was very resolute, like, “You need to consider this.” He wouldn’t tell me necessarily what to do, but he would always put it in a way that was black and white.

Sometimes when you’re so confused in the whole process, you do need someone that tells you [how] it is. I’ve always felt like that’s how he would treat his friends. That’s how he would treat an aunt.

He would do the same thing to any one of us, so I just appreciated his candor and his honesty all the time.

Did you make the decision to undergo a mastectomy?

I definitely was an advocate for it, in that my one side ended up having lobular and ductal. Lobular was pulling the nipple in and was a hot mess inside there. I think lumpectomy would never even have been an option for that side.

I just didn’t want to have to worry. I wanted things to be symmetrical. In my mind, my mom had a lumpectomy, it came back, and then she got a double mastectomy. That just meant some more peace of mind for me.

But I understand their statistics. Everything’s always changing. Maybe it’s not necessary, but for me I did have peace of mind doing it. No one ever really questioned it, and it wasn’t a difficulty at all.

Did you have a choice to pursue chemotherapy?

My oncologist showed me a piece of paper, and I used to think that I liked statistics, but then he made me realize I’m not sure if I do.

He told me if I did no chemo and no radiation, my chances of dying from cancer in the next five years were 50%. That’s pretty humbling news, so in my mind, that’s not an option.

Surgery (Double Mastectomy)

Describe the prep before the (double) mastectomy

I remember going in early in the morning, talking with the anesthesiologist, and them wheeling you back. It was a really long surgery. Between taking both breasts, checking the lymph nodes, and then putting expanders in, it was about a 10-hour surgery, maybe 11, which is a very long time for anyone to be under.

I even had my in-laws come and stay with my husband because I was worried about him just being there by himself for so long, too. They came and were part of it, which was amazing to have that support. If it’s a double (mastectomy), just plan that things can take a very long time.

Describe the double mastectomy

I understand some people start off with chemo to see if markers are shrinking and different things, but in my case, they wanted to do the surgery first. They did the double mastectomy right after Labor Day. Within a month of my diagnosis, I had the surgery done.

They took 15 lymph nodes on the one side, and then the other side they took off as well. Of the lymph nodes, 2 came back with cancer in a macro way and then 2 micro, but definitely 4 were impacted by cancer.

The good news is there were 11 that were not, and that was pretty much the extent of the cancer, from the scans and everything else. The surgery was very challenging.

It’s just a testament to being in a weird position for so long. There can be other side effects, actually. My toe hurt for a couple of days, which is crazy. I’m not saying that’s going to happen to anybody else. but just the way that they position you and being under for so long, you know it’s a long time.

I remember coming back to the room, and at first I felt really great, but I still was probably under the pain medication, everything that they had given me. Then a wave of just feeling nauseous and horrible. Then a nurse came in and said, “You look so pale; we’ve got to give you something.” I had to take some more medicine.

That first night was pretty rocky, and I spent 2 nights in the hospital. On that third day, I went home. By then I was ready to go home, but that first day and a half, it’s really tough.

I have never been in a hospital since I was an adult, so it’s just difficult to have someone come in your room and check on you every couple of hours.

Those machines, when your legs are moving and making noises, it’s just a whole different world. Some people are maybe more used to it from having surgeries as an adult, but for me it was definitely a learning curve.

»MORE: Read more patient experiences with surgery

What were the side effects after surgery?

You’d go home with drains that had to stay in for 2.5 to 3 weeks. Then you had to go in and see your surgeon. They put expanders in at the same time to get the skin ready for the upcoming implants.

The whole mobility thing was really, really challenging. Mentally I felt fine. I wasn’t really tired afterwards. I could walk [and] do things, but just learning how to eat cereal or just put on a shirt was very, very challenging.

I wanted to wear button-down shirts because it’s just really difficult to get anything over your head and raise your arms.

I remember eating cereal with my left arm because I felt [like] a caveman, but I felt a caveman either way, whether I eat with my right hand or my left. It was just crazy to relearn some things that are so simple.

I did these “Itsy Bitsy Little Spider” exercises all the time to run your fingers and stretch your mobility. I definitely took it seriously and tried to work on all the exercises they had you do.

When you’re in the midst of it, you just feel, “Am I ever going to be normal again?” It’s definitely a very slow and gradual journey. From that point forward, it takes a long time to feel right again.

How long did it take to recover?

The first week at home, my mom was with me, so she did all the cooking [and] all the laundry. It was very helpful to have someone there, because I couldn’t lift. I was very limited in what I could do.

I don’t even think you can even lift a half gallon of milk. You’re probably not even supposed to. You’re very limited in what you can lift and how much weight your arms can raise.

I couldn’t take a shower because of the drains, so that was really difficult. Had I thought things through, I would’ve maybe cut my hair shorter, knowing I was going to go into chemo and do that next. Just because the showering part or having to take a bath is so much more complicated, and obviously brushing your hair is really difficult.

It’s pretty humbling to be 37 years old and having your mom give you a bath and comb your hair and do all those things. You’re an independent woman, so it’s really difficult and humbling. But I made it through, and all I wanted to do was shower. It was my end goal.

I do remember when the bandages came off, and at that point in time, my mom had stayed with me for a week. My best friend had come and stayed with me for 4 or 5 days, so I was finally alone. The weight of it all was just enormous.

Seeing myself with just this body I didn’t recognize, the emotional toll of it — that was really hard. Probably more than even the physical part of it.

Describe the drains

They fill with fluid, but you had to measure the contents [to see] how much was draining. I had a little checklist, and we had to get it down. When they finally got to a certain amount low enough, then the drains were able to be removed.

Basically, it was tubing inside of you that connected to this little bulb. For me to leave the house and go do anything, I had to pin the [tubing] together. I didn’t want them showing, so I had to hide them in some way.

What were the expanders put in during the mastectomy?

They put in these expanders, and then they would fill them every week or every 2 weeks. I’d go in and see my doctor, he put a little more cc’s [of fluid] in [the expanders] each time to gradually stretch the skin so that next April I had the exchange surgery. Then those expanders came out and actual implants went in.

Chemotherapy

Describe the surgery to put in the port (used to deliver the chemo)

I didn’t have any issues with it. You could shower. I think you could go swimming, even though swimming was obviously not advisable. You could do whatever and live your normal life.

To me, it was more so I just felt like an alien. If you just have this weird thing sticking in your upper chest, your clavicle area, it just looked weird. I just felt like I looked like a mutant or not a human.

But it really was convenient because, obviously, they don’t have to find veins every time, and you don’t have all that. I was fortunate I never had any infections or any issues with it. It actually was quite a convenience once I look back and look at it now.

What was your chemotherapy regimen?

Chemotherapy regimen:

  • Adriamycin & Cytoxan (AC)
    • 4 times every 2 weeks
  • Taxol
    • 1 time a week for 12 weeks

I did 4 rounds of Cytoxan and Adriamycin, or the Red Devil, which is the really tough kind. They have to test your heart just to make sure it’s strong enough before they give you that stuff.

That was 4 times every 2 weeks, starting in mid-October 2013. Then I finished up Thanksgiving weekend. After Christmas, I started the Taxol or Taxotere, and I did 12 rounds of that. That was every week.

How long did the chemo infusions take?

They would do blood work to make sure your levels were fine, so my white blood cell count. The potassium is often an issue. They’d run a series of blood tests to make sure you’re okay, and then once that came through clear and your doctor could see it, then they would clear the chemo drugs for me.

Usually from the time I got there till the time I left, it was probably 4, 5 hours. Other people would get different infusions. I was just getting the Adriamycin at the time, Cytoxan, or the Taxotere, so I was just getting that.

They usually push through Benadryl at the very beginning, so you’d get this wave of feeling sleepy before I would even start, and then the chemo would drip usually for a couple of hours. Then you were good to go.

At the time, I’d have to come back the next day and get a Neupogen shot, which helps curb infection chances, but now I think they’re doing that even on the arms. People go home with it now, whereas at the time when I was doing it, I had to come back in the next day.

Describe the side effects of the chemo
  • AC:
    • “Hangover” feeling
    • Heightened smells
    • Nausea
    • Loss of appetite
  • Taxol:
    • Brittle, dry nails
    • Constipation
    • Occasional diarrhea

I had really bad nausea. First time I did the Adriamycin-Cytoxan, I went in, probably administered about 10 or 11 in the morning. By the time I got home, it was early afternoon, and by 4 that afternoon I just felt horrible. It felt like a hangover, and you had no idea when or if you were going to throw up, but you just felt you were going to throw up. I felt that way probably for 3 days.

My smells were really heightened to me. My cousin was there, and she was making pancakes. I didn’t even know pancakes had a smell, but it was the most horrible smell ever. I was like, “Oh my gosh, I have to leave this level of the house; I can’t even handle it.” I was taking the anti-nausea meds that they gave me, but it was almost like I was behind, and I could never get ahead.

I would not have any hunger. I am always hungry, but I had no hunger. For me to eat maybe a teaspoon of Cream of Wheat and maybe a cracker in a day was enough. I had to force myself to even do that.

Usually by about the third day, I’d start to get hungry for something again, and then I knew it was out of my system. I tried to walk and keep active because movement is definitely good. You want to keep your body moving.

You want to drink as much water as possible, but even water I ended up hating. I ended up switching to sparkling water — it tasted so much better — and ginger ale. I tried to do different things. Even today, I still hate Ice Mountain water. It reminds me of my chemo at the hospital because that’s the water that they gave you there.

Then with the Taxol, I didn’t have as many of the food issues. I felt I could pretty much eat normally. The cumulative of the effect of the chemo was definitely brittle nails, and I tried to put Sally Hansen “Hard as Nails” every other day. I put tea tree oil on my nails. I didn’t end up losing any nails, but you could just tell they were really brittle and really dry.

I definitely had issues with constipation. It was sometimes you’d go from diarrhea to constipation even in one week. It was just a crazy roller coaster of things.

I think emotionally I just felt a little less stable with the Taxol. I just felt more anxiety.

Again, it could have just been the cumulative effect of chemo and just the whole weight of everything. I definitely felt just more vulnerable than I ever had emotionally.

What helped with the chemo side effects?
  • AC:
    • Emend for nausea
  • Taxol:
    • Constipation: MiraLAX, prunes

When I talked with other survivors that had been through chemo, they describe this Emend, which is a stronger anti-nausea. Then I talked to my oncologist about it, and he prescribed that for me rounds 2, 3, 4, and that made a huge, huge difference for me. I still didn’t feel good. I was still tired, just unbelievably tired.

The diarrhea wasn’t as common. I do remember constipation to be more so an issue, and I remember MiraLAX. I remember buying prunes. I remember my doctor telling me, “Try this; try that.” At one point, literally praying to my grandma, who had passed away, and just being like, “Will you please help me?”

That was pretty hard. I just went to a point where I don’t know what to do. My body just doesn’t seem to be working. That’s pretty tough. After I prayed to my grandma, everything seemed to get kicked into gear, so I think she’s taken inventory up there. It was really tough to handle all that part of it [and] just try to be somewhat normal.

You feel like you can go anywhere, or is that going to be the moment where nature’s going to strike and you need to go? That was difficult.

»MORE: Cancer patients share their treatment side effects

Reconstruction Surgery

Why did you decide to pursue reconstruction surgery?

I was 37 years old. I’d only been married a few months at the time of my diagnosis, so for me to feel as close to what my “normal” was, I did want some kind reconstruction.

It’s very personal. I did the implants, and I guess I always felt if it wasn’t meant to be or if it didn’t take or there was infection, I would have gladly walked away and just been fine with it, too.

But it was worth a shot to try to make me feel, in my mind, what was as ‘womanly’ as possible — to what I was before my cancer diagnosis.

I definitely have scars, and I did use nipple tattooing by my plastic surgeon about 6 months after the actual surgery. Seeing those tattoos and seeing a vision of something that looks in my mind somewhat normal, that’s actually when I got a lot of tears because I felt at that point in time I had come full circle.

Today with a bra on, I don’t feel I look any different than it’s been before. I’m very pleased with the results and how everything went.

But I do know a lot of people had a lot tougher times than me, or even infections and different things. Sometimes it’s not possible, with the skin, with radiation, and what the impact is.

Describe the process of the reconstruction surgery

That part was quite easy. You did all the fills (expanders), which stretched the skin, and then you got to the exchange surgery, which for me was April 2014.

I’d just gotten out of chemo about 6 weeks prior to that. I think the hardest part was as soon as you felt you accomplished something or were done with something, then it was a whole new ball game of something new challenging on your plate.

That surgery itself wasn’t actually too bad. I didn’t feel my recovery was too difficult or anything. I threw out the first pitch for the [Chicago] Cub’s baseball game about 3 weeks after that surgery, which is crazy. That was my fun fact, but obviously I felt fine enough to do that not that long after, with my doctor’s approval of course.

What was the tissue expander process?

They’re filling it with cc’s of fluid, and it’s just slightly expanding your breast area. When I came home from the surgery, I actually had little lumps — it was these tiny expanders — so I wasn’t completely flat-chested.

There was just this little bump in there, and then gradually over time they’re filling it up with these cc’s, but it was very, very hard. I’m a belly-sleeper, so you can’t even began to lay on that side of you. They’re bricks. When you get your implants in, then they take the expander out, but it’s created space and tissue and allowed that construction then to come in.

Then it feels more a normal breast. I can now lay on my stomach again. I can have the movements to me. The expanders are truly to slowly stretch the skin over time.

How did you choose between implants or flap surgery?

They did talk to me about that, but the recovery time was so long [for flap surgery], and they felt they could do implants. I just didn’t want another surgery. I felt that was the most advantageous to get me back my normal life.

Radiation Therapy

Describe the radiation therapy cycle

It was 5 weeks, 5 times in a week, so Monday through Friday. I would go around my lunch hour every workday. They had a setup time frame. They tattooed you, they traced it all where they need it to go, [and they] made a mold specifically for your body. That happened prior to the 25 rounds of [the radiation].

From the time you were in there, it was very brief. Most times it maybe took 5 to 10 minutes. It wasn’t a very long procedure. It took just as long to basically get changed into your gown and get all positioned than the actual process itself, so it was fairly quick.

Were there radiation side effects?
  • Sunburn feeling
  • Pain

I know a lot of people would get tired or have side effects, and maybe because I was coming off chemo and still improving for me, it wasn’t super tiring. I was feeling actually probably better than I had been just because the chemo had really worn me down.

I remember I bought aloe plants, and in addition to the medication that they prescribed, I put aloe plants on my skin each night. I drank aloe juice, and I tried to just heal my body as much from the inside with aloe juice.

I didn’t have my skin break open or have major issues, but it is crazy. Even though you’re done after 25 rounds, there’s still a reaction happening to your skin. About 3 days after my radiation, it was just really, really painful.

It felt like a million little pencil pricks or something. It just was really painful. I would either take an Advil, or if I was at home, I’d actually have a shot of whisky. Then it was done, and it was fine, but it did look like you have a sunburn on you where the radiation was being targeted.

Then it was pain pretty much after. The last few days were maybe more intense, so that’s what’s weird. Even though you’re think you’re done, you’re not really done.

»MORE: Read other patient experiences with radiation therapy

Hormone Therapy

How did your oncologist introduce the hormone therapy?

Because my breast cancer was estrogen positive, I was going to do some hormone blocking thing. Some people don’t react to well to tamoxifen, so there’s different kinds, different estrogen-blocking methods. He wanted to come and try me on the tamoxifen first.

Then my oncologist had just gone on some summit or medical conference. He had come back and said, “Well, they just did this study on people under the age 35, and they’ve shown a 7% greater chance of survival rate when they’ve done the Zoladex trial.” At the point, I was 38. He said, “I know you’re over 35, but I think it’s worth it for you to try this. I think this will be in your best interest.”

The Zoladex shot, I think, was actually started for a different cancer, and then they just realized that it does have some benefits for estrogen-positive recipients.

I started doing that shot. At first we did it once a month, and then we found that there was a time release one that we could do every 3 months. I’ve been on that the last few years. That essentially put my ovaries to sleep. Between the 2, there’s not a lot of hormones in my body anymore. Basically, it just tries to shut down all the hormone activity.

At first they talked maybe it will be 5 years. Now it’s sounding like 10 years, and I’m even hearing rumors people may be on this for life. Side effects willing — so far, I’m pretty good with all the side effects.

I still have hot flashes. I definitely have some moody PMS issues when I first was on tamoxifen, but I don’t know if it’s because I’m in full-blown menopause now. But I feel fine. I feel just like my normal self.

How often do you take tamoxifen and Zoladex?

The tamoxifen is a pill that I take daily. The Zoladex is every 3 months. Usually my doctor visits just coincide with that, and they check me out. I don’t have to get mammograms anymore because I literally have no breast tissue to examine, so they usually do a really detailed self-examination and then do the Zoladex shot at that same appointment.

Does the hormone therapy have side effects?

I feel like it’s harder to lose weight, but I have now taken a more serious role with it.

I do think with estrogen blocking and all the different things, my body is like that of a 60-year-old. Muscle mass and all that becomes more important, and it’s harder to lose weight just normally.

I have proven that it can be done, but it takes a lot more effort and work. I think that’s normal with aging, too, but definitely with tamoxifen, I think that’s an added impact.

»MORE: Read more patient stories of hormone therapy

Describe the post-treatment scan & results

[6 days after the scan is] when I got the results, so not too bad. I had it done on a Saturday and got the results on a Tuesday. Waiting over the weekend is always tough.

I wrote this in my blog that day:

Dr. Singh called me back, and it’s just funny how you can tell so much from the first greeting. He told me my scan was clean and all was good!  Today is a good day. God is Good!!! 

I was elated and over the moon! All that heavy lifting of chemo upon chemo and radiation after radiation had done its job. 

Hair Loss

Describe the hair loss

It’s just so personal. You have this image of who you are, and when you have to change that, it’s very difficult.

I would just keep walking by this wedding picture of myself that was 4 or 5 months prior, and it was really hard to see this long, blonde hair in this picture and this mental image of myself, then to look in the mirror and not see that.

I got it cut shorter in preparation for chemo. I think it was late September, early October. Then with my first chemo, I think it was by the second chemo, 2 weeks after, I was definitely losing my hair.

I went in actually the night before Halloween on my way home from work. I ended up stopping at a Sports Clip and just said, “Cut all that hair off.” I think they ended up charging me a senior rate. I think they felt really bad for me.

But it just felt so much more normal for me to do it at a hair salon of any kind, just to see it on their floor and on their sinks.

That felt like where it should be. If I had seen it in my own sink, I think I would’ve been really disturbed or just too upset about it.

I had a shaved head. I’d gone for a wig consultation and had 2 different wigs, but I really loved my shaved head. It still had hair, and it still had some substance to it.

I wore that shaved head for probably a month to 6 weeks. Then it started to get just really patchy, and it just wasn’t uniform anymore.

I switched to wearing my wigs. Plus it was winter, so it was okay to wear something scratchy and hot sometimes.

Even during Taxol, my hair actually started to grow back near the end. I started to get peach fuzz. Then definitely by late March to early April time frame, it was starting to grow back very, very short. Very pixie. It just started growing and kept growing.

I found that it just wasn’t the same as before. I used to color my hair and make it more blonde, and it wouldn’t take the color. It just had a mind of its own for probably a year or so. It did what it wanted to do.

What did you wear when you were bald?

At home I wore beanies and hats. When I went out in public, though, when I went to work, I would typically wear a wig. I was on medical leave from mid-to-late January until early April. I was at home actually quite a bit, so it didn’t really matter what I wore. I did wear more beanies just because it was more comfortable.

Any advice to others on managing the hair loss?

I would say to cut it shorter in advance. Maybe that doesn’t mean shaving it, but I will say that, again, seeing it at a hair salon cut short just feels still somehow more normal than seeing it at home.

I would say have a little bit of fun with it. I did a hairstyle I wouldn’t have normally done, but I had fun with it. I know other people who did mohawks. I know people who just did funky things or colored it hot pink or unicorn.

But I would just say have a little bit of fun. The one thing that you can control is how it’s going to go, so maybe have some fun with it before it goes.

Did you know about cold caps (to try and save hair)?

There are people that do the cold cap. That wasn’t an option for me, but I would definitely look into it and see what that option is. I hear a lot more survivors talking about that option now. Every year it’s different.

There’s more advances. If hair loss is something that really bothers you or you want to talk to your doctor, I would definitely talk to them about that.

»MORE: Dealing with hair loss during cancer treatment

Work & Finances

How did you balance work and life during treatment?

I felt in order for me to be me, I still wanted to work, and that worked for a little while. Having the support and love of all my coworkers was definitely amazing.

Then I just got to a point [where] I just felt like I just couldn’t [work]. I was just really sad, and I just didn’t know what to do. I felt foggy and really not sure.

I remember going to a support group, hoping that others would talk about work-life balance. But so many of them were in their 60s. They were already retired. I got a lot of love and support, but I didn’t get that “how do you balance it all” thing.

How was the financial aspect of treatment?

They talk about being your own advocate health-wise. If you get a bill, it doesn’t necessarily mean you owe everything on that bill. Sometimes you have to just follow up and make the calls. Sometimes you don’t have energy either, so you need help to get through it.

Sometimes hospitals offer different people to help you navigate through that. One of the things I remember thinking was, “Oh my gosh, if this were my grandma right now, she would have probably paid $10,000 more than she ever needed to because this isn’t really a bill.”

This is just telling you an explanation of something. Sometimes I really had to call and get to the bottom of what I really do owe, even fighting things because sometimes the insurance wouldn’t pick it up until you connected all the dots for everybody.

I had to be my own insurance advocate a lot of times, but I was actually very grateful for what I had to spend [out of pocket]. I was very lucky. Very blessed.

Support & Care

How did you manage the mental and emotional stress during treatment?

I think it was that January leading up to my medical leave, I was sick. I wasn’t feeling good. I felt like I had a cold. I was trying to work from home a couple days a week, yet I was getting called. “Why aren’t you on this call? Why aren’t you on that call?” It was just very overwhelming.

I would say normally I could have handled all that stress; that’s just who I was as a person. When you’re going through all the chemo and the cumulative effect of it, you might not be able to handle stress like you normally can.

It’s okay if it’s not okay. If you need to talk to your doctor, which I did, you should do that. I do [appreciate] his sage advice telling me, “You really need to consider taking a medical leave.” For me, it was the best decision I’ve ever made.

It was close to 3 months at home, and I could protect myself from germs. My doctor just told me to do something every day that makes you happy. I thought that those were really powerful words.

Sometimes I would just make pizza from scratch with yeast and the bread dough. One day I made a pie, or one day I did an art project. I did yoga every single day on a videotape at home called Gentle Yoga.

It was self-care. I just took care of myself. I really did have to prioritize myself and my mental being. I felt like I’m doing everything the doctors need me to do. I need to take care of myself.

It wasn’t being selfish. It was doing what I needed to do for my body and just listening to it and slowing down. I’ve worked a pretty stressful, crazy job, and it just put a lot into priority for me.

It’s hard to slow down for many. Any tips?

I did this Gentle Yoga tape, and I used to think yoga was stupid. I really did. I was just like I don’t get it. I’m an endorphin junkie. I want to run. I just want my immediate fix. Just give me that. Honestly, I went into it with a whole different mindset during my treatments.

They talk so much on this yoga tape about surrendering and having this balance. It’s not only the push; it’s also the pull and the surrender, and just how important that is. Just being a net and letting it flow through.

All these things really resonated with me during my treatment, and something as simple as the breath and just focusing on it. It’s almost magical.

It was really transformative for me to just take that time and to truly focus on each breath and on just slowing down. It was good. Sometimes you have to.

I’m not trying to say that my job or anything led me to getting my cancer, but I feel one of the silver linings was just coming out of it with a greater sense of boundaries and a greater sense of balance.

Were there big surprises during treatment?

I think probably because I had seen my mom go through it, I guess not so much. My mom gets sick. [If] she goes on a cruise ship, she gets sick. She goes on a car trip; she gets sick. I’m just not that. She goes on any boat; she gets sick.

I was like, “I just don’t have that motion sickness thing that you have.” I thought I would be fine, genetics aside. Then she literally would get sick at 4 o’clock after her treatments, and I would get sick at 4 o’clock after treatments.

I don’t know what was genetic or what was what, but despite me going into it thinking I wouldn’t be my mom, I was exactly my mom in terms of throwing up at 4 o’clock. It was just crazy. That was probably the biggest thing.

I had witnessed so much with my mom going through it. She went through chemo 2 times, once when she was 46 and then once when she was 49. She did the red devil the first time, and then the second time she did the Taxol. I at least had some familiarity with it.

Finding your community

I ended up turning to Instagram because I met so many amazing people who are also younger and trying to balance and do that. That was a great support network. But truly I just made a decision.

I remember waking up after my doctor told me about, “Who’s your advocate?” I just woke up one day, and I was like, “I can’t do this. I’m doing everything I possibly can: chemo, radiation, surgeries, all this stuff, but am I really taking care of myself?”

I couldn’t answer honestly that I was if I continued to work.

Thankfully, I was in a position where I could take a medical leave and still get paid. I understand not everybody’s in that financial position.

For me, it was the best thing for me to do at the time for my body to just take a break. It was actually a really amazing time, just a peaceful  time.

Were there moments you had to self-advocate?

Yes. I think at the beginning, my oncologist really wanted me to get chemo at his facility. I remember going in there, and it was just really sad. I had a friend who was getting an infusion for a different treatment at a cancer center at the hospital.

I just wanted to go there. I just felt that everyone had their private area, so I felt my husband could come with me.

For me, it just seemed much more of a natural place to get chemo than in this office with people lined up in chairs. It really was heartbreaking.

I remember working with the nurse navigator, and she helped advocate for me, too, but we eventually got my doctor to understand that I just didn’t want to get it done here.

If you feel very passionate about something, you definitely have to find people on the same team as you. You can definitely push, push back, and try to seek alternative options that meet your needs better.

How important was it to have caregivers around?

My mom was such a support for me, obviously. I just remembered that my first oncology appointment was horrible. The waiting room was horrible.

I remember getting into my car and calling her, just crying and crying and crying. You need that person that can just allow you to be and let you cry and let you get your feelings out.

Obviously, my husband was an amazing support. He helped me to be more normal and to feel more me. We would go for walks together, and it felt like each walk, each step, was closer to the finish line.

That was really great. He was really supportive of all the work ups and downs and everything that happened with the work aspect.

Then it’s the sisterhood. Breast cancer’s just really an amazing sisterhood. Everybody wants to help everybody else. I met some amazing women that I’m still friends with, and I continue to meet more people.

That’s what inspired me to start my podcast, DJ Breast Cancer, just to help people through and be that girlfriend’s guide. Just to tell them how I felt and to feel like they’re not alone.

If you have a best friend going through breast cancer, you could listen to this podcast and then also feel, too, “I can maybe be a better friend, because this can maybe start a conversation or could maybe help me be a better friend.”

Any advice on how to ask for support?

I think support comes in a lot of different ways, and for a lot of people, it’s different. It can be as formal as a support group. It can be talking to your doctor.

Cancer is not a do-it-yourself sport. You need a team. You really, really do, and you have to find people that are going to help you on the journey.

It’s okay if you take a day, and you just need some time to yourself. At the same time, you have to rely on other people. You need people to take you to appointments.

You don’t ever want to go to your first consultation appointment on your own. Don’t do that. Then for rides for chemo, you often can’t drive yourself back home. You don’t know how you’re going to react to the medication.

You’re going to need a team of people. Sometimes they can be your best friends, and sometimes it can be people that you meet at your support group. I had an amazing person, Sandy Clausen, who came into my life, and she took me to so many of my appointments. She was just my angel. She just helped me through so many hard times.

Unfortunately, she got metastatic and I lost her, so it was really hard. She’s actually [whom] I dedicated my podcast to. She’s just the example of support and women helping women.

You don’t have to know people. You can just feel, you just help them through, and that’s just what you do. She’s just an amazing example of that.

Survivorship

What does “life after cancer” mean to you?

Just really embracing life. It looks a whole lot different than before cancer. I just really enjoy living my life. It’s really important to me now to live my life fully and with a purpose. It’s not enough to just show up.

No, I have to be present, I have to be engaged, and I have to believe in what I’m doing. Try to help people and make them more aware about breast cancer and that it’s not an easy cancer.

It’s been dubbed, “You have the good cancer.” Well, no, I don’t. There’s no good cancer, and I won’t rest until something’s been done about it.

It’s just finding beauty in the simple things. Taking a walk. It is making a meal from scratch. It’s telling people that you love them. It’s just a lot more simple on this side than it was before. That’s, to me, one of the beautiful gifts of the whole journey.

How has it been managing menopause at such a young age?

I remember thinking, “I want to have my period. I don’t want cancer to take that away from me.” I got one period, and I was like, “Oh no, you can have it back!’

Then it was funny because I went on the Tazocin and the Zoladex, and it went to my wishes. Actually, I don’t miss that part at all. I would just say it’s the hot flashes. There are some mornings, between the hairdryer, the hot coffee, whatever outfit I picked out for the day, I’m like, “Save me right now or send me an iceberg, one of the two.”

But I don’t really miss having my period. It does change your dynamics; my husband and I thought that maybe we could have a family.

He has a daughter from a prior marriage. It definitely changes when you know you can’t. It’s just this finality thing. Okay, well, this is my life now, so you just have to make the best of it.

I have 2 goddaughters, whom I love to death. One is 13, and one’s going to be 3. I’m just determined that one day they’ll live in a world where they don’t have to worry about breast cancer.

I try to fight for that day and be active in causes that research breast cancer and are trying to make a difference.

Now for a fun story: both happened at Chicago Cubs baseball games!

I was on a train, actually going back to Michigan at the end of my chemo, and the hospital called me and said, “Hey, we picked your name out of a hat, and you’re going to go to some Pink Out game at the Cubs.”

I was like, “Oh, cool.” All I cared about was can my husband come with me, because I just didn’t want to go by myself. They’re like, “Yeah, we’ll get back to you on the details.”

Then a month later, they called me. I was just back at work just after my exchange surgery, and they’re like, ‘Hey, would you like to throw out the first pitch?’ I was like, ‘Yeah, that’s not even a question!’

I’m from this crazy sports family, so yes, the answer was yes. It was amazing. Obviously, you get nervous at a lot of different things, but it was the craziest feeling.

I went to the mound, and I never felt nervous. I just felt like I’m a winner.

This is just an amazing end to such a journey, so it was really awesome. It wasn’t a strike, but the catcher caught the ball. 50 Cent had gone not far before I did and made a total idiot out of him, so I’m like, “Whatever I do, I’m going to be better than 50 Cent.”

And I was. I’ve got that going for me, and Wrigley [Field] is just so historic and so amazing.

Then the next year, they asked me to come back for the Pink game and do the seventh-inning stretch with 2 of my survivor friends, one of whom was my friend Sandy, and then my other friend Ronnie. That was a great experience.

Looking back at it now, I’m even more fond of it because despite all the hardships we went through, we had that one day that wasn’t about cancer. It was just about fun and the Cubs and just being there. It was amazing.

Any more advice for people dealing with a new diagnosis?

It’s definitely a roller coaster. There’s going to be ups, and there’s going to be downs. I think it’s just hold on tight, and you may never get back to a complete normalcy, but things will get better. I think that’s all I can stress.

In some ways, you’ll appreciate the journey. Looking at it on the other side is just totally different. It’s amazing, and you just appreciate more, but it’s not easy.

It’s okay to have a bad day, and it’s okay to be down. If you find yourself staying there, then you’ve got to talk to somebody. Is it your doctor, is it your nurse, or is it a counselor? You have to talk to somebody if you find yourself just staying in a down place. You need to.

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Combination Type Breast Cancer Stories

Natalie
Natalie W., DCIS, Stage 0, ER+; Paget’s Disease



Symptom: Lump in right breast

Treatments: Lumpectomy, double subcutaneous mastectomy, hormone therapy (tamoxifen)
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Symptoms: Pain in left breast, left nipple inverting

Treatments: Double mastectomy, chemotherapy (AC-T), radiation
Tina C., DCIS & LCIS, Stage 3A, ER+



Symptom: Sunken in nipple of right breast

Treatments: Double mastectomy, chemotherapy (AC-T), radiation, hormone therapy (tamoxifen, Zoladex)

Cat L., IDC & DCIS, Stage 2B, ER+



Symptom: Pain in left breast radiating from lump

Treatments: Bilateral mastectomy, chemotherapy, hormone therapy (tamoxifen)
LaShae R.

LaShae R., IDC & DCIS, Stage 2B, ER+



Symptoms: Lump in breast, pain
Treatments: Chemotherapy (Taxotere and cyclophosphamide), proton radiation

Categories
Breast Cancer Combination Types Lumpectomy Mastectomy Reconstruction tamoxifen

Natalie’s Stage 0 ER+ DCIS & Paget’s Disease Breast Cancer Story

Natalie

Natalie’s Stage 0 ER+ DCIS & Paget’s Disease Breast Cancer Story

Natalie shares her stage 0 breast cancer story, getting diagnosed after finding a lump on her right breast. She details undergoing multiple surgeries, including a lumpectomy, then double mastectomy, and reconstruction, as well as hormone therapy.

In her story, Natalie also highlights how she got through the emotional roller coaster of cancer, being a young mother undergoing treatment, and the importance of patient self-advocacy.

  • Name: Natalie W.
  • Diagnosis (2):
    • Ductal carcinoma in situ, ER+
    • Paget’s disease of the nipple
  • Staging: 0 (earliest possible)
  • 1st Symptoms: Lump found on right breast
  • Treatment:
Natalie Wilson timeline

I wouldn’t be doing the things I’m doing now had I not had cancer. It’s sad that this had to happen, but sometimes these are the kind of things that have to happen before people realize that they need to change things up a little bit.

If you have a cancer or struggle that you feel like you can’t make it out of, you need to be able to say, ‘If tomorrow I’m taken away, at least I can say that the life I lived was happy, and I did things right.’

The life you’re living right now, make the most of it.

Natalie W.
Table Of Contents
  1. Diagnosis
  2. Treatment Decisions
  3. More Diagnoses
  4. Remission & Reconstruction
  5. Hormone Therapy
  6. Quality of Life Reflections

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Diagnosis

What were your first symptoms?

My first symptom was a lump, actually. It was not painful, but it was quite hard. I’m from a Jamaican background, and in Jamaica we have a fruit called guinep. On the outside, it’s kind of soft and squishy, but on the inside it’s hard. It was about like that, and I’d say 2 cm round on the side of my right breast.

I felt it when I was in the shower lathering up. I wasn’t one of those women that did the regular monthly check. It’s not something I learned growing up. It was just something that I came across while I was lathering up. That’s how I knew that something was there and wasn’t right.

My breast had never felt like that. My breasts had just gone back down to normal size after nursing my third child, and that was what allowed me to feel it.

Had I still been nursing and my breasts been engorged, I wouldn’t have felt it.

What do you remember of your first visit to the doctor?

The first visit was to see my family doctor. I’m not the type of person that gets too worked up about things if I don’t have a definitive answer, so I wasn’t feeling scared or worried.

I just wanted some answers and went in with an open mind. She’s a young woman herself, so she said, “Okay, let’s just get you in for a mammogram and ultrasound.”

Even through the mammogram and ultrasound, I was still quite level-headed. It wasn’t until the mammogram came back saying it was nothing that I had a concern because the feeling was still there, and I just knew. A woman just knows her body. I knew that this was not nothing.

That’s when I asked the doctor to send me to a specialist who deals with cancer patients and reconstructive surgeries and all that. That doctor said to wait 6 months. She wanted to wait and see if it changed.

How did your doctor give you the diagnosis?

Then 6 months later, I did have a lumpectomy. This is when I started to get worried. Between the lumpectomy and the 2 weeks I had to wait to get the results, that’s when I was concerned.

It was like they had something that could really give me a definitive answer, and I had all this time prior to that to stew in it, so I was nervous waiting to hear the answer.

My doctor and I are quite friendly. She’s a nice lady. We talk about fashion and all that. We always preface our conversations with that before we go any further.  I don’t know if that was her way of lightening the mood this day or what, because she didn’t have good news for me.

She said, “I don’t know how I’m going to tell you this because I didn’t expect the answer myself, but you have breast cancer.” She said she felt the lump after surgery and didn’t think it was.

She said it didn’t look like it was cancer, but it was. She did tell me that if there was any kind of breast cancer to have, this was the one.

How did you react to the diagnosis?

I don’t know if anyone wants to hear that they have cancer, but it was coming from a doctor who knew what she was saying, or she wouldn’t have said it.

At that point, I was by myself. Then 2 weeks in after surgery, I was feeling pretty normal. My husband was working, so I said I could go by myself.

Shock. Disbelief. Sadness. Scared. Worried. All those feelings that a young mom has. I have 3 children. My youngest was just under a year.

I worried for them because this was new to me. Oftentimes when you hear cancer, you associate it with death, so of course the tears started falling from my eyes and the worry set in.

»MORE: Processing a cancer diagnosis

How did you break the news to your loved ones?

I definitely called my husband first as soon as I got in the car. I was overwhelmed and full of tears. He had me take a breath and calm down. His first question was, “What are they going to do now?”

My doctor had decided that she wanted to discuss it with the chief head surgeon of the hospital. When I left the appointment, she hadn’t given me a next course of action, so I didn’t know what to tell my husband. I was still waiting for answers myself.

He’s more of a worrier than I am. He’s a typical man, though, and keeps things within, but I know that was killing him.

I came home, and we said we were going to wait and just went back to business. Honestly, we went back to taking care of the kids [and] working. All the kids were in sports, dance, piano, so you just keep going.

»MORE: Breaking the news of a diagnosis to loved ones

Treatment Decisions

Did you get a second opinion?

The second opinion came from the chief of the hospital. My doctor called and said, “I’m going to send you to him, and he’ll talk to you about what the next steps will be.” That appointment was within a week.

When the doctor took the lump out and sent it for pathology at that hospital, the technicians damaged my sample. Instead of calling the doctor to tell her that the sample was damaged, they automatically sent it to another hospital — a cancer research hospital in Toronto. That hospital was the one who came back with the results.

It was upsetting for me that they took it upon themselves to send it away after damaging it without letting us know what happened, but at the end of the day, the results came back, and that’s what we needed to take the next step.

The chief now had both sample readings — the damaged one and the one that came back from the cancer hospital. They both said the same thing. It was stage 0 DCIS, still within its sack.

What were the next steps after getting the diagnosis confirmed?

He suggested I have an MRI, and it came back that there were some suspicious spots in the marginal area near the lump. He suggested we either go in and take out more tissue — which would leave a big gouge in my breast — or have a subcutaneous mastectomy.

Subcutaneous, meaning they would leave the nipple and take out 95% of the breast tissue. He said, “Go home, talk to your husband about it, and let me know.”

I understand that a lot of things should be discussed between both parties, but that just kind of stopped me in my tracks. At the end of the day, this is my body, and this my decision.

I knew that I wanted to do what was supposed to stop the cancer from coming back again, which was to do the mastectomy.

On top of that, I knew that I had the opportunity to leave my nipples and do reconstruction, so we booked it. I told the doctor, “While we’re there, I would like to do both breasts.”

I didn’t want to have to worry later on in life about cancer resurfacing in my other breast. He suggested that I do some more research on because they usually just work on the problem breast, but I knew I wanted to do both. That was what happened. I got the double subcutaneous mastectomy.

Describe the double mastectomy complications

To make a long story short, I ended up having 10 surgeries with this doctor to get these breasts built back up after the subcutaneous mastectomy, including adding in the tissue expanders, the emergencies, and all that.

I formed a lot of scar tissue. That was causing a lot of problems because the implants were being squished. My breasts weren’t round. They were sort of oblong. The scar tissue was so hard and painful.

This doctor did so much research. She traveled to Europe, even, because they have a history of a lot of successful cosmetic surgeries, and she said she was going to go find out if there was a way to get rid of the scar tissue. She finally came back and said she couldn’t help me.

She found a great doctor for me at a teaching hospital in Toronto who uses a human cadaver tissue. They can use it in different parts of the body, but for me, she used it in my breast to give me some more muscle and form a hammock to hold the implant and stop the scar tissue from building. I think that took 3 or 4 surgeries with her in order to rebuild the breast.

She put in the human cadaver tissue to add to my muscle, let me heal, and had to go back in. She did fat grafting, so she took fat from my inner thighs and put it in my breasts. I had 3 sessions of that. Then she put back in the implants. That was surgery number 13.

More Diagnoses

Cancer found in nipples (Paget’s disease)

Around the time of that surgery, 8 years after diagnosis, I noticed my nipple started to look odd. My nipple was looking odd, cracked, and bleeding. It looked like how it looked when I first started nursing.

When you nurse and your baby suckles, the nipples get pretty irritated and red, and it looked like that. When I was going in for surgery 13, I told my doctor, “Look, something doesn’t look right. Maybe my nipple is finally dying after almost losing it.”

She said she would have a look at it. She took a sample of it when she was finishing up the surgery and sent it off. That came back as cancer of the nipple.

When she came back in to tell me that that was what that was, it was utter shock. First of all, I didn’t know there was such a thing as nipple cancer. Then, after going through 8 years of surgeries, you’re ready to call it a day. I was so glad to be at the end of it.

To hear that I had cancer once again, I was angry. I was thinking back to my previous doctors and how nobody informed me that there was such a thing as nipple cancer.


What did your doctor do about the nipple cancer?

What we ended up having to do was book another surgery to remove the nipple. It’s not a matter of just taking the circle. It’s taking away a good chunk of your breast tissue in order to get rid of the nipple, the areola, and the tissue around it. That was surgery number 14.

From that surgery, because she had to take so much tissue, my breasts started to basically burst open because I’d had so many surgeries. My skin and muscles were worn out.

My breasts were forming pressure ulcers. With that, I had to have surgery number 15. It was to fix the problems from the previous surgery.

She took out some extra tissue to just be sure she got all the nipple cancer, and that was great.

Then there was a third diagnosis. How did you react to that?

I went in for my results after the nipple removal, and she said, “We found more cancer.” She took out the nipple and had went in to take more tissue, and it showed that there was further DCIS in my skin.

I didn’t have tissue anymore. The bulk of what I have is muscle and implants. Of course, if you have skin, then you have connecting milk ducts, even if you just have 1% of tissue. That’s where the DCIS resurfaced.

This time, it was the weirdest feeling. It was like I had heard it so many times, I wasn’t surprised. I didn’t react right away.

I wasn’t heartbroken and sobbing. My husband had that reaction. I turned and looked at him, and he was sobbing. He looked like he was hyperventilating.

My role changed at that point. I had to console him. I was playing the role that he was to play. I asked the doctor what was next. She said, “I think we need to get rid of that whole reconstructed breast and start from scratch.”

All the surgeries I went through to get this breast back culminated in needing to remove the whole breast all over again. Surgery number 16 in the summer of 2016 was where I ended up losing the full breast again.

I was okay with that. It was like I was finally getting rid of the problem. It was like cutting off that infected limb that keeps causing other infections. We got rid of it.

Remission & Reconstruction

Deciding whether to reconstruct

After the last surgery, I just wanted to heal. I didn’t want to talk about surgeries for a while. I didn’t know if I was going to bother with reconstruction again at that point.

I just wanted to take some time and think about why I would want to rebuild them and whether or not I’d be doing it for the right reasons.

I decided that I wanted to know if I was going to rebuild because I was worried about how I looked physically or because I couldn’t live without a breast emotionally. I needed to know what my real reasons were.

I went to prosthetics. They’re great for women that don’t have breasts. They look and feel natural. Nobody could ever tell that I didn’t have a breast on one side. Because the left side was also reconstructed and part of the fat graft was shrinking, I was wearing a partial prosthetic on that side as well. I was wearing 1.5 prosthetics, and I was okay.

About a year and a half later, I decided that I wanted to try one more time. I decided I wasn’t going to let cancer win. The only option left for me was to use the LD muscle from my back. What they do is they take a good chunk of the muscle, tissue, fat, and skin, and they cut a diamond shape, bring it around your arm, and they place it where your breast will go.

From there, I had more fat grafting sessions. They had to start taking fat from different parts of my body because they had already taken from my inner thighs multiple times, and they were showing effects of that. She used fat from my abdomen.

When your fat dies, sometimes instead of absorbing back into your body, it can form an infection. That’s what happened across my whole chest.

I was on an IV and morphine until it went away. Then we proceeded with another fat grafting session since that one didn’t work.

On May 2th, 2019, I had my last surgery — which was surgery 20 — to implant more fat and put in the implant finally. What they do is they add the muscle, fat, more fat, and then the implant.

Finally, it’s completed as far as the major surgeries. To me, it’s a victory to have gotten this far. I have 2 mounds that I call my breasts. I still just have 1 nipple, but you know what, I’m fine. If I decide to add a nipple, I will. If I decide to leave it, so be it.

Is there anything you wish you had done differently during treatment?

The nipple thing was a big faux pas on a lot of people’s parts. No one told me that if I left my nipples that there was a high chance of cancer forming there.

If you’re leaving your nipple, you have to have some sort of blood supply in order for it to survive. I knew that there was 5% of the breast tissue left to keep the nipples alive, but I didn’t correlate that with cancer resurfacing.

What I wish had happened is that they would’ve given me all the answers. As doctors and health care providers, they should’ve been giving me all the possible scenarios and answers to questions I didn’t know to ask.

I made the decision that was best for me and my health, but if I don’t even know that something could happen, how was I supposed to ask those questions?

Are there any lasting side effects that you can think of from your surgeries?

With regard to the LD surgery, my doctor used so many fat grafting sessions so she didn’t have to take so much muscle from my back. I’m waiting to get back into the gym and to my regular fitness training to see if I have any mobility issues. That’s the one possible concern I could have.

Right now, I have to be gentle with my chest because they’re implants. They could always potentially rupture. With regards to my health, I go to an oncologist for him to feel around and see if he feels anything.

As far as lasting effects, my energy level isn’t perfect because of having so many of the transfusions. I have an underlying blood condition.

The doctors don’t quite know what it is. I take a lot longer to heal internally than others. I’m very low on iron, so I have to keep up on my iron pills. Other than that, I really live a full life.

What is your follow-up surveillance?

I don’t have MRIs regularly anymore, and to be honest, that’s the only thing that would keep me 100% worry-free because that’s the only thing that gives you all the answers you need.

Mammograms and ultrasounds don’t work for me anymore because I have implants. It’s a matter of physically feeling around and watching how I feel.

When I was diagnosed, I didn’t feel sick. I didn’t feel pain. There was just the lump. It’s like I don’t know what to look for, and I’m relying on the doctor to feel around and make sure nothing is wrong, and even that doesn’t give me confidence really.

It’s a matter of minutes in the appointment. I’m considering finding a new oncologist because of that. You have to advocate for yourself because you have to feel confident. If you don’t feel confident with your doctor, find a new one.

Hormone Therapy

Describe the physical impacts of the hormone therapy

To be honest, there were a lot of low points in the first 5 years. When I got diagnosed, I was on the tamoxifen. The tamoxifen can throw you into early menopause. With that comes a lot of emotional struggles.

Describe the mental and emotional impacts of hormone therapy

When I speak about this, I’m very candid about it because women have to understand that when they’re on tamoxifen or any other medication like it, you’re going to feel a lot of side effects.

You’re on it for 5 years or more, so you have to learn how to deal with it.

One time I was driving home from my godmother’s house with my 3 kids in the truck, and I felt this overwhelming feeling to turn the wheel and drive the car over the bridge or to drive the car into another truck. It was just so overwhelming.

The drug plays tricks on you. You become depressed. There were a lot of dark moments. I recall a lot of times in the shower, wanting to be in the dark just sitting in the tub.

Quality of Life Reflections

The emotional impact of treatment

A lot of people think reconstructive surgeries are just reconstruction. You’re going through a lot of emotions because you’re not just fixing your physical body. It takes you back to the real reason why you’re even having the surgery in the first place.

You have to deal with the bad C-word: cancer. Like I said before, it’s hard not to associate cancer with death. You worry for your children. You worry that it’s going to come back. You just worry all the time that you’re not going to make it through surgery.

Even though they’re cosmetic or sort of routine-seeming surgeries, you’re always scared you won’t make it through because anything can happen. Each surgery I had, it played on my mind.

Even after this last surgery, I still think about it. I wonder if it’s ever going to come back. I don’t let it consume me, but I do wonder. Now that I have implants and that physical part is built back, I sometimes wonder if I risk masking cancer if it comes back.

I think that’s a big reason why a lot of women choose not to rebuild. They don’t want to hide the possibility of finding the cancer again at a later date if it shows up.

I trust in the technology and doctors, and I trust in God. I try to live my life as best as possible. I try to do good and support and give back, and I feel that I’m putting positive light out into the universe and hoping to get some of that back.

What helped you deal with this level of stress?

I went to my family doctor and said, “Something’s got to give here, because I’m not doing well. I’m arguing with my husband about things I wouldn’t ever argue about. I took a trip to Mexico for a week by myself. I’m doing all these crazy things.” I knew something was going on.

She put me on a very light antidepressant to bring the melatonin levels up to the happy place. I don’t know that I like this idea — give me medication to fix a problem and another to fix the problems the other caused — but it helped. I was weaned off of it within 7 or 8 months. That limited the stress.

In that time, I went to counseling, and I learned how to limit my stress levels because stress is a killer in and of itself. I knew I had to keep that under control. I knew I had to contain myself because I knew I couldn’t keep welling up like that.

I know that God spared me 3 times in not giving me such a late stage of cancer each time it was found. We had it taken care of. I knew I was here for a reason. I try to do things right. I eat well, exercise, give back, and I talk.

Speaking about it is what’s really helpful. When you get all the heavy stuff off, it’s almost as if you’re saying, “Here. Someone else carry this for a while.”

It feels so much better and so much lighter. That’s what I do right now as a business, and it’s really helped me.

How important is it to have caregivers and support?

There are caregivers in many forms. There are your doctors, obviously. There’s your partner. They’re the ones that are going to give you emotional support you need.

There’s the support of your friends that’s going to take loads off as far as your kids and activities they need to get to, and your house — helping keep it in order when you’re low. Your parents are there to give support.

There are your church and people of faith around you to help you build yourself up within. Without having that, it doesn’t make sense. If you don’t have faith that you’re going to be okay, you’re probably not going to be okay. You have to put the positivity out there in the universe, and that universe for me is my faith.

Your children give you support, too. They remind you that you always have something to look forward to. You have to be here to see them grow. You have to be at their graduations, games, weddings, and all that. It motivates you, and that’s caregiving.

»MORE:  What kind of support cancer patients say helped the most

How was it being a young mother and being diagnosed with cancer?

Because it spanned for so many years, I had to deal with it in different ways. My oldest is 19 now, the middle is 14, and my youngest is 11. In the early years, my youngest, my son, was a newborn. My middle would’ve been about 4, and my oldest would’ve been about 9.

They were too young to explain the details. They knew that Mommy was sick and she was going to have surgeries, but she was going to be okay.

As the years went on, they knew I had cancer, they knew it was in an early stage, and they knew I had to be on medication to keep the cancer from coming back. They knew I was going to rebuild and that I have fake boobies. They would see my prosthetics in the bathroom, or sometimes I would just take them off because they’re uncomfortable.

When it came back in 2016 is when I sat down with all of them. At this point, it was a different kind of conversation. I didn’t want to keep things from them. This time, I told them it was the cancer I had before but had come back again. I told them it was going to go away, and I wouldn’t have to go through chemo or radiation, but I was going to need more surgeries to get rid of it.  They understood.

They were still concerned, but I had to reassure them over and over again that I would be okay. I can only imagine what they were going through in their heads. I know how my husband and I felt when the cancer came back, so I can only imagine what they were going through. That was the hard part for me.

I needed to learn how to not wrap myself so much in the fact that I was in so much pain, and I needed to be there for my kids. I think that’s what forced me to get up and going so soon after all the surgeries.

I needed for them to see me normal. For me, it would mean that they knew I was okay. I think had I been in bed all the time, they would’ve thought I wasn’t okay.

My eldest daughter is like her dad. She’s more stoic. She wasn’t around with me much. She would ask if I needed anything, and she would message my other daughter to see if I was okay, but she stayed in her room a lot.

Much like my husband dealt with it, she was worried. She didn’t like to see me in pain. Seeing me that way was hard for her.

That’s part of what I’ve learned through my healing process. I had to learn how other people grieve and deal with emotional struggle. People deal with it differently, but that doesn’t mean that one cares less than the other does.

»MORE: Parents describe how they handled cancer with their kids

Were there times during treatment you had to advocate for yourself?

I saw an additional oncologist other than the initial doctor and aside from the chief head surgeon. They sent me to an oncologist. It was like I was the doctor, and he was the patient.

He said, “You had the mastectomy, so you don’t need to do anything. You’re good.” I said, “Well, what does that mean?” He said I was going to see the chief surgeon at the hospital, and he would tell me what to do next.

I said, “They sent me to you for a reason. I didn’t have a mastectomy. I’m going to have a subcutaneous mastectomy. They’re 2 different things.” He said, “Oh. Let me look at the chart.”

If you’re a doctor, you should be right. There’s a difference between the subcutaneous mastectomy and a mastectomy. The subcutaneous mastectomy where I left my nipples is why the cancer came back the second time.

If he was being diligent and looked at his chart, maybe he could’ve advised me further and said, “If you’re concerned about it coming back, you should know there’s a possibility of nipple cancer.”

I didn’t know about nipple cancer back then. After getting it, I realized there were so many things I didn’t know. I researched some more, and the onus should’ve been on the doctors.

Do you have any advice on self-advocacy for others?

You’re not just a number. These doctors have a lot of patients, but you’re a human. You go in there and let them know you’re not a number. You have concerns about your health, and your doctors should be concerned about you.

While you’re there, if you don’t understand something, tell them. If they say you need to do something and you don’t understand it, say something. If they’re failing to tell you that you need to do something, ask.

If there’s something that another doctor has recommended and this one isn’t, bring it up. I think that women should find another doctor if they’re not comfortable with the one they have.

Perhaps bring someone with you. In your time of turmoil and stress, you’re not going to have the wherewithal to ask all the questions you need to, so bring someone with you.

Research, ask questions, [and] tell them you want all your information so you can take it to another doctor if they’re not meeting your needs. You’re entitled to your scans. That’s your body.

If you don’t understand the lingo, tell them. Say, “I don’t understand what you’re saying. I’m not a doctor. Can you explain that to me?”

»MORE: How to be a self-advocate as a patient

How was the financial aspect of going through treatment?

I’m in a position where we’re financially okay. I could stay home and not work a day in my life. My husband’s business can take care of everything, but I’m not that girl. I’ve been working since I was 13. I love to work. I’m an independent woman. I like to have my own money that I know I brought in.

I like to activate both sides of my brain. I’m creative. I’m a licensed paralegal, but I’m also a decorator and stager, motivational speaker, and makeup artist.

I have my hands in a lot of things part-time. I don’t overdo it because physically, I need to take care of my health. I work as casual as I want to.

In Canada, we have unemployment insurance. You pay into that when you’re working, and it can kick in if you apply for it, but it only covers part of it. Your bills are not going to change just because you’re sick. Your mortgage isn’t going to change because you’re sick.

You want to keep your children in some normalcy, and life must go on. What happens then? For a lot of people, it is hard. I haven’t had the issue, but I understand it.  I help women I talk to now with their utilities, groceries, transportation to and from the hospital, things like that.

Your cancer inspired the work you do now

In 2016, when I realized I had been through cancer 3 times and was still standing, I had to do something with that. There was no reason why I shouldn’t be imparting what I’d learned through my experience to women who might be in a similar situation.

I went through all those stages of healing until I got to an end stage of philanthropy, where I just felt so overwhelmed and wanted to give back. I wanted to share how I was able to persevere through each circumstance. I wanted to show that I’d been through the dark times and depression and prove that you have to persevere. At the end of each day, there’s a beginning of another.

High Heal Diaries is a platform where women can share their stories with other women. Nobody’s judging anybody.

The platform comes in different forms. I do a YouTube talk show. I do the keynote speaking engagements. I do life-coaching. I’m a certified coach practitioner. For those not at a place yet where they are able to speak about their issues in a public form and want help, I can help them get there. I do inner and outer beauty makeovers.

I believe in look good, feel better. I believe when you feel good on the outside, it transcends and transforms how you feel on the inside.

If you look in the mirror when you’re sick and think you look horrible, you’re going to feel horrible.

If you put a little makeup on, get your hair done, and you smile at what you see in the mirror, you’re going to feel happier. If a woman is going through a struggle, we’ll help them with wardrobe shopping, maybe a little makeup, skincare, facials, whatever, in order to help them feel better about the outside and then coach the stuff on the inside.

What is your “new normal” after cancer?

The new normal is really busy. The new normal for me is living a good, full life. It is not taking everything on. I’ve become a little more selfish. It’s not a bad selfish. I come first. If I’m not good, then nobody else is going to be good.

For my kids, if I want to sleep until 12 in the afternoon, they’re old enough to go downstairs and make themselves breakfast if I need to rest. Far too often, women put everybody else in front of themselves. We mask all of our issues. We take care of everyone else, but we mask our own.

On top of that, I don’t want cancer to ever come back. I think I’ve learned what I need to learn now. I would never take away the fact that I had cancer, though. I would never change that part of my life because I’ve become a better person.

I wouldn’t be doing the things I’m doing now had I not had cancer. It’s sad that this had to happen, but sometimes these are the kind of things that have to happen before people realize that they need to change things up a little bit.

Do you have any final words for anybody who may be going through something similar?

I just want women to understand that there are a lot of things out there in society and the environment that we need to cognizant of as far as what we’re putting in our bodies. I’m not going to go off on a tangent about doing all these drastic things because everybody’s going to do what they need to do, but a lot of times we just live, and we do. Sometimes we need to think of how we live and what we do because everything has ramifications.

Also, I’m not preaching. I’m not one of those Bible thumpers, but you have to believe in something. You have to believe in a higher power, because we are not doing it on our own. You have to believe that although you might be sick, you have to pick up and keep going as best as you can.

If you have a cancer or struggle that you feel like you can’t make it out of, you need to be able to say, “If tomorrow I’m taken away, at least I can say that the life I lived was happy and I did things right.”

The life you’re living right now, make the most of it.

Thank you for sharing your story, Natalie!

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Combination Breast Cancer Stories

Natalie
Natalie W., DCIS, Stage 0, ER+; Paget’s Disease



Symptom: Lump in right breast

Treatments: Lumpectomy, double subcutaneous mastectomy, hormone therapy (tamoxifen)
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Symptoms: Pain in left breast, left nipple inverting

Treatments: Double mastectomy, chemotherapy (AC-T), radiation
Tina C., DCIS & LCIS, Stage 3A, ER+



Symptom: Sunken in nipple of right breast

Treatments: Double mastectomy, chemotherapy (AC-T), radiation, hormone therapy (tamoxifen, Zoladex)

Cat L., IDC & DCIS, Stage 2B, ER+



Symptom: Pain in left breast radiating from lump

Treatments: Bilateral mastectomy, chemotherapy, hormone therapy (tamoxifen)
LaShae R.

LaShae R., IDC & DCIS, Stage 2B, ER+



Symptoms: Lump in breast, pain
Treatments: Chemotherapy (Taxotere and cyclophosphamide), proton radiation

Categories
Abraxane (paclitaxel) Adriamycin (doxorubicin) Arimidex (anastrozole) Breast Cancer CAPOX (capecitabine, oxaliplatin) Carboplatin Cytoxan (cyclophosphamide) Ductal Carcinoma In Situ fluorouracil 5fu Gemzar (gemcitabine) Herceptin (trastuzumab) Lapatinib leucovorin Lupron (leuprorelin) Mastectomy Metastatic Navelbine (vinorelbine) Neulasta Perjeta (pertuzumab) Radiation Therapy Taxotere (docetaxel) TCHP

Alison’s Stage 4 Triple-Positive Metastatic Breast Cancer Story

Alison’s Stage 4 Triple-Positive Metastatic Breast Cancer Story

Alison shares her stage 4 triple-positive breast cancer story. She was diagnosed at just 34 years old after finding a lump under her right arm and breast area. She details undergoing chemotherapy, mastectomy, radiation, and targeted therapy.

In her story, Alison also highlights how she dealt with 2 relapses, how she parented with cancer, the impact of the diagnosis on her relationship with her spouse, and the support that helped her most.

  • Name: Alison R.
  • Diagnosis:
    • Breast cancer
    • Partially differentiated DCIS, triple positive at age 34
  • Staging: 2 metastatic relapses
  • Symptoms: Lump under right arm and breast area
  • Treatments:
    • Chemotherapy:
      • 6 rounds of TCHP– Taxotere, Carboplatin, Herceptin & Perjeta
      • Gemcitabine, Cisplatin, 5FU & Leucovorin
      • Abraxane (paclitaxel), Adriamycin, Herceptin & cyclophosphamide
        • Adriamycin switched out for Navelbine when lifetime dose was reached
      • Capecitabine oral chemo during radiation
    • Surgery
      • Bilateral mastectomy with right axillary lymph node removal
    • Radiation
      • Right breast and axilla, 33 treatments
      • To right neck after metastatic relapse, 33 treatments
    • Targeted therapy
      • Tykerb (lapatinib)
Table Of Contents
  1. Diagnosis
  2. 1st-Line Treatment
  3. Relapses
  4. Reflections

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

As much as you can, try to take it one day at a time. It can feel really overwhelming if you try to look at the whole picture. If you can keep focused on what’s going on today, it’s a lot more manageable.

Something else that’s helpful for me is journaling. I write about things that have worked out and things I’m thankful for. That helps me stay grateful in hard times.

Alison R.

Diagnosis

Can you talk about your first sign that something was wrong?

We had moved from Nebraska to California, but I was back home with my kids visiting family. I felt a lump under my arm. My mom is a nurse, so I had her feel it. She asked if I had anything on my breast. We started looking, and sure enough, I felt a long, flat spot on my right breast.

She said it was probably nothing but suggested I go ahead and check with my doctor when I got home. I was visiting for about a week, so when I got home, I went and saw my OB.

She said, ‘You’re young. It’s probably nothing, but we’ll check it out.’

We did an ultrasound first because I was breastfeeding and couldn’t do a mammogram. We did an MRI next. Then we did the breast and lymph node biopsy. 

What was the biopsy like?

They were fine-needle biopsies, and it was an interventional radiologist who did them. They kept saying that the biopsies weren’t going to be bad, but it was actually more painful than I expected. 

The one in my breast wasn’t that bad, but the one in my armpit (the lymph node biopsy) hurt. They hit a nerve the first time.

I still have some numbness in my ring and pinky finger from that. Under my arm was sore, and I had more swelling than I expected. The breast biopsy wasn’t a big deal.

How did you receive your diagnosis?

The doctor called and said they had my results, if I wanted to go ahead and come in. She told me it was breast cancer in the breast and the lymph nodes. My husband left work to head there. It was just me and my 18-month-old daughter when she told me.  

I realized then that I was prepared for it to be breast cancer, but I wasn’t prepared for it to have spread to the lymph nodes.

I was a little bit shocked. I took in the information, and I was crying. My daughter was on my lap, and she was like, ‘Be happy, Mommy.’

About that time, my husband walked in. I let the doctor tell him. We hadn’t really told anyone that I was getting tested for anything when I got the diagnosis.

We wanted to gather all the information and handle our own emotions before taking on the emotions of others as well. I called my parents on the way home. 

»MORE: Patients share how they processed a cancer diagnosis

You had boudoir pictures taken

A friend of ours takes all our family photos. Her mom died of ovarian cancer and had the BRCA gene. She’s had a prophylactic mastectomy.

I knew that even if it wasn’t cancer, there was a chance they’d have to remove it. Before I got the diagnosis, I had asked her to take boudoir photos for me. 

I just wanted to capture my body how it was even if it wasn’t cancer because I knew it could still change it.

I don’t know why I thought of it at the time. It was for my husband. Then I found out it was really for me, too. I’m really thankful I did that.

Since then, I’ve had a mastectomy, but I’ve never had reconstruction, so I’m really glad I have those. Because of her history, I think it was special for her to do that with me.

1st-Line Treatment

What was your treatment plan?

I had a lot of testing, and we first met with the surgeon. He was friends with the oncologist. He messaged her when she was on vacation, and she called me. That was amazing.

They wanted to do surgery, but because of the size, they decided to go ahead and do chemo first to shrink it before surgery. 

You underwent genetic testing

My HER2 test results came back equivocal 3 times, so it felt like a long time waiting in between getting diagnosed and starting treatment.

When we finally found out I was triple positive, we could start. That was about a month later. 

What was your first chemo regimen?

I started with TCHP chemotherapy regimen — taxotere, carboplatin, Herceptin, and Perjeta. The first time I went in, it was a really long day. I got all of the pre-meds and chemo drugs on the same day. Then, 3 weeks later, you get the next round of them. I did 6 rounds. 

After the first round, I ended up with a neutropenic fever. My white count got really low. I ended up in the hospital. Everyone who came in had to be gloved up. My husband thought I was going to die. I didn’t have that fear at the time, but he did.

After that, my white count came up, and we continued, but I took Neulasta after infusions. I used Benadryl, Claritin, and ibuprofen each time I got a shot, and that prevented the dreaded bone pain. 

What were your side effects from chemo?

Summary: mouth sores, hair loss, taste changes, fatigue

I got mouth sores, and those were not fun. I tried the Magic Mouthwash. I tried a steroid paste. I tried viscous lidocaine.

The doctor started me on Acyclovir and I didn’t get mouth sores after that. 

I lost my hair. I shaved my hair before chemo. I had my kids do it because I wanted them to have some control, and I figured it would make more sense to them. I went ahead and shaved it so I could donate it, because they wanted it pre-chemo. Plus, it made more sense to my kids.

My taste buds would be okay for a couple of days, then things would start to taste funny. By the time it started to feel better, it would be time to start the next treatment. 

I had fatigue. I didn’t ever get nauseous really. They managed that well, and for the most part, I think my body tolerated the chemo pretty well, too. 

I would do labs before doing chemo each round. After the 6 rounds, we did a breast MRI. I didn’t do a PET scan. I had actually begged for PET scans, and nobody would do it. On the breast MRI, it looked like it was pretty much gone. 

»MORE: Cancer patients share their treatment side effects

How did you feel before the mastectomy?

I did a bilateral mastectomy and right axillary lymph node removal. I had my nipples removed, too. I just wanted to be really sure that I was reducing the chance of having a recurrence.

I was okay with all of that. It did feel weird to lose my nipples, but my doctor said it reduces the chance of recurrence, so I said okay. 

To prepare, I was just in a fight mode. I wanted to stick around for my kids. I wanted to be more aggressive.

I have a friend who had been through breast cancer and a cousin in Texas, and they both shared their experiences with me. I talked to a few people who had been through it before. 

Right before surgery, I remember feeling nervous about the anesthesia. I didn’t want to wake up during surgery. The nurse navigator reassured me that there were people whose only job was to keep me asleep.

What do you remember of waking up from surgery?

I was in some pain when I woke up. I had a compression garment over my chest. The surgeon wasn’t as empathetic as I would’ve hoped he would be after surgery. I wanted to see my chest after surgery. He was basically just like, “Well, it’s going to look freaky.”

The nurse navigator offered to look with me. I removed the garment, and I remember seeing the staples across my chest. I didn’t feel highly emotional about it or anything.

I had a lot of swelling. The mastectomy wasn’t really painful in my chest, but under my arm was really sore. I had drains in. I had a post-mastectomy bra that had pockets for them. I was nervous to get the drains removed, but it wasn’t as bad as I thought it would be.

What was radiation like?

After recovering from surgery, it was time to start radiation. I met with the radiation oncologist. I went in, and they did an MRI and mapping. They planned out where they were going to radiate. 

They would take me in, get everything lined up, walk out, and then radiation itself was so fast. 

There was this picture on the wall of a lake scene. I think it was meant to be comforting, but it just made me feel like I was going to die. It wasn’t a terribly scary process, though.

I was mostly just tired. I had quite a bit of fatigue. That lasted a couple of months, even after radiation had ended. I also had some minor burning on my skin in the areas they radiated. I had Silvadene cream for that, though, and that helped. 

Switching oncologists

We moved from California back to Nebraska, so I switched oncologists then. It is hard because you develop some trust with your team.

Luckily, my oncologist in California recommended a doctor she was on the ASCO board with. It was orchestrated seamlessly. 

You had some more treatment after NED (no evidence of disease)

I had been on Lupron injections to shut down my ovaries since my cancer was ER+. After radiation, I started on Arimidex, which is an aromatase inhibitor to suppress any other estrogen. That’s just a daily pill. I also had to finish up 6 months of Herceptin infusions. 

I had gotten my port taken out during my mastectomy because my daughter lays on my chest, and her head would always hit it.

That was okay, though, because Herceptin isn’t as hard on the veins, so I just got it infused through an IV. 

How were you feeling after you finished treatment?

I was getting back into my normal life, but that was a time filled with a lot of stress and anxiety for me.

I was seeing my counselor for my anxiety. He asked, “Has your mom or husband talked to you about taking anything for your anxiety?”

I would fixate or obsess over things during that time. I ended up started on a low-dose of Effexor XR, and that has helped tremendously. 

Relapses

How did you find out you relapsed?

I felt something in my neck. There was something that felt familiar about it. It felt like what was in my armpit originally. We did an ultrasound and biopsy of that.

I was at the movie theater with my kids. My oncologist’s nurse called, and she said, “I’m so sorry. It is breast cancer.”

That was harder than the original diagnosis. I had the fear that it was going to come back, but I never expected it to happen that soon.

I had known enough to know that stage 4 was so much more serious.

My husband came over, and I said, “Well, I need to go to Houston to get a second opinion. I need to call the doctor.”

He said, “No. What do you want to do right now? The kids are about to walk out of the theater.” We agreed he would take the kids home, I would go for a jog, put the kids to bed that night, and talk after that. 

I wanted to get a second opinion at MD Anderson and at Salem Oncology Center because my cousin had seen a doctor down there. He didn’t take insurance, but our cousins and godparents helped us financially so that I could start treatment with him.

What was your chemo like the second time?

I started treatment at Salem Oncology Center. My dad went down with me. We arrived on Sunday, and I went in to get a port put in again. I got wheeled straight into my new doctor’s office. 

I did gemcitabine on Day 1. Then I did cisplatin on Days 4 to 6. He would fractionate it. He gave me the full dose over those 3 days. That wasn’t as toxic on my body.

A few days later, I’d get gemcitabine again. Then I’d get 5FU and leucovorin. The next week, I’d get gemcitabine again, and then I’d have a full week off. 

I didn’t lose my hair on that regimen.

I had a few mouth sores, but we figured out a dental paste that helped. I used viscous lidocaine. I didn’t have a lot of side effects with this regimen. 

After one round of chemo, we did a CT and PET scan. I had a 60% reduction. I stayed for one more round. Then I came back to Nebraska. I found an oncologist in Lincoln who was willing to do it, because it was working. I did a few more rounds with him.

I was in complete remission again after that. 

What happened when you went into complete remission?

Once I was in remission, my doctor in Nebraska wanted to stop chemo and start radiation again. My doctor in Houston wanted to keep the chemo going. We had another decision to make. 

I met with another oncologist here in Lincoln who happened to know my doctor in Houston. They worked together for 17 years. I made the decision to keep going with chemo. I had to find another local oncologist who would follow the protocol. I found one in Omaha.

He was comfortable working outside of the box. He said because patients aren’t standard, treatment doesn’t always have to be.

Relapse again

I found another tiny lymph node in my neck. I asked to push my trip to Houston for an early scan. The radiologist just thought it was an active lymph node. My doctor said he trusted my fingers, though, and the radiologist did a fine needle biopsy. 

It came back positive for cancer. My doctor wanted to switch my protocol. I went for a month of treatment. I did another round of chemo down there.

Then I came back to Nebraska, did another round or 2, and I was in complete remission again.

At that point, I did consolidation radiation. I did that here in Nebraska. They put the thin mask over you, and it hardens.

They’d hook me in, and I would panic a little until I could swallow the first time.

I lost 15 pounds or so during that radiation because it was just on the edge of my esophagus. Eating became difficult, so I was just doing a lot of shakes and stuff, so I think that’s why I lost weight. 

I did chemo during radiation. That regimen was Adriamycin, cyclophosphamide and Abraxane. They added Herceptin back in as well.

During radiation, he took me off of Adriamycin and put me on capecitabine instead. 

Are you in remission currently?

I was back in remission, but I did a couple of more rounds of chemo again. Then, once I was in remission, I would do a month of chemo on and then a month off. After a year of doing that, I moved to doing 1 month of chemo and 2 months off for a year. 

At some point, I hit the lifetime dose of Adriamycin, so they switched that out for Navelbine. I’m currently still doing 1 month of chemo and 2 months off, but I’ve been in remission since August 2017. 

If I stay in remission for a while, there might be a point where we spread it out even further or where I don’t have to do chemo at all, but for now, I’m just taking it one step at a time. 

Reflections

How have you handled this mentally and emotionally?

I have wonderful friends and family, I see a counselor, that low dose of Effexor XR helps tremendously, and I’m a believer. I pray. I feel like God has given me the strength I need. He’s brought so many people into our lives. He’s been so faithful that I trust even if I do die, He’s taking care of this. 

I used to worry about dying as it related to my kids. Then it clicked one day. I can’t worry about not being their mom later. I’m their mom right now.

I have to focus on right now. I accept grace for each day. I can’t know what’s coming, but when I get there, I’ll have grace for that day, too.

I’m not as fearful as I was in the beginning. Now, I feel like I’m able to be realistic about death, but I also know I could be around for a long time. I don’t know which one is my future, but I’m at peace with that now. 

How is it being a parent with cancer?

They were so little when I was diagnosed. Now, my son is 8, and my daughter is 6.

About 2 years ago, my daughter’s friend’s mom died from breast cancer. That was the first time my son brought up death and cancer.

He said, “Mom, did she die from her chemo and her cancer?” I had to say, “Yes, she did.” My daughter said, “Mom, are you going to die when I’m a kid?”

I said, “I don’t know. I hope not, but if I do, you have Grandma, your aunts, and your dad, who all love you.” We have those conversations now. We talk about how some people die from cancer, but others don’t. 

We’ve also been very sure to use the correct terms in order to not confuse them.

We’ve made it very clear that Mommy has cancer and has chemo. We don’t say, ‘Mommy is sick and needs medicine.’ We’ve made it clear that they don’t have cancer, Daddy doesn’t have cancer, and they can’t get it from Mommy like a cold.

»MORE: Parents describe how they handled cancer with their kids

How has cancer affected your marriage?

It’s brought us a lot closer. We’ve had to get even clearer in our communication. It’s given us the opportunity to have some really deep and hard conversations. 

He’s really good at bringing me back to the moment. One time, I relapsed, and I said something about wanting him to get remarried but would wish it could be me.

He said, “That’s not happening right now. Let’s think about what’s happening right now.” He brings me back to the present moment a lot. 

We talked about how it was a hard thing at first to let people help. He still has to work through some of that, and I do, too. 

»MORE: 3 Things To Remember If Your Spouse/Partner Is Diagnosed With Cancer

How has the financial aspect of treatment been?

Thankfully, we have insanely generous cousins, who gave us the money to be able to start treatment in Houston. That was hard on my husband because he felt weird accepting that. He wouldn’t even buy himself a candy bar for a while. 

When I do treatment in Nebraska, it’s covered by insurance. My doctor here said that insurance could decide at any point to not cover it, but my medical team works really hard. 

We have a high deductible, so we just save in other ways and are careful with our money. 

Can you talk about hair loss?

You never know if it’s going to bother you, but thankfully it didn’t bother me. Except there were times when I didn’t really know how to dress and be bald.

The second time, when the kids shaved my head, they were really mad. They didn’t want me to lose my hair. They were mostly okay with me going bald.

I did have wigs and hats, though. I posted a picture on social media of me in all the different options. That way, if I saw someone, it wouldn’t be awkward for them.

Then the third time I lost my hair, my kids wanted me to wear the wig. I’d ask if they wanted me to have hair or no hair, and they’d always choose the wig.

I was a little bit bummed when I lost it the second and third time because I looked sick. When I was going through treatment and didn’t lose my hair, it was nice because people didn’t necessarily know. 

My hair thins now, but it’s nice to still have it. It’s better than not having it. I’ve gotten to try out all the short hairstyles I was always too scared to try before cancer.

»MORE: Dealing with hair loss during cancer treatment

How people have supported you

Some of our friends distanced themselves because they didn’t know how to handle it or deal with it. Other people stepped up.

Now, I think everyone is more comfortable with it. People brought meals, care packages, and offered to help with the kids. 

One thing that happened when I relapsed was one friend had a bunch of people dress up in superhero shirts and send me pictures. That was nice because it was so encouraging, anyone could do it, and it didn’t cost them anything. 

The care packages were always so nice. I got a lot of lotion made for someone going through chemo, scarves, blankets, and so many helpful things. 

Even just a text or note of encouragement went such a long way. Having someone just say something is great. I think sometimes people don’t know what to say, so they just don’t, but just say something.

Ask, “How are you today?” I think, “How are you?” is a hard question.

»MORE:  What kind of support cancer patients say helped the most

What advice do you have for someone who has just been diagnosed?

As much as you can, try to take it one day at a time. It can feel really overwhelming if you try to look at the whole picture. If you can keep focused on what’s going on today, it’s a lot more manageable. 

Something else that’s helpful for me is journaling. I write about things that have worked out and things I’m thankful for. That helps me stay grateful in hard times. 

Advocate for yourself and ask a lot of questions. Find an oncologist you’re comfortable with. Especially if you have late-stage cancer, keep going until you find someone who’s willing to fight as hard as you want to. 

Thanks for sharing your story with us, Alison!

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Ductal Carcinoma In Situ Stories


Erica C., DCIS, Stage 0



Symptoms: Indeterminate calcifications found on a routine mammogram
Treatment: Double mastectomy
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Symptoms: Pain in left breast, left nipple inverting

Treatments: Double mastectomy, chemotherapy (AC-T), radiation

Alison R., Partially Differentiated DCIS, Stage 4 Metastatic



Symptom: Lump in underarm/breast

Treatments: Chemotherapy, surgery, radiation, targeted therapy
Categories
Breast Cancer Carboplatin Herceptin (trastuzumab) Invasive Ductal Carcinoma Lumpectomy Metastatic Radiation Therapy Taxotere (docetaxel)

Shari’s Stage 4 IDC Triple-Positive Metastatic Breast Cancer Story

Shari’s Stage 4 IDC Triple-Positive Metastatic Breast Cancer Story

Shari shares her metastatic breast cancer story, which began with her finding a lump in her breast. She details undergoing a lumpectomy, chemotherapy, and radiation.

In her story, Shari also describes navigating life with cancer, from facing metastasis, dealing with scanxiety and hair loss, being a self-advocate, and how the diagnosis impacted her marriage.

Shari
  • Name: Shari S.
  • Diagnosis:
  • Staging: 4
  • 1st Symptoms: Lump in breast
  • Treatment:
    • Surgery
      • Lumpectomy
      • Oophorectomy (removing 1 or both ovaries)
        • To get off the Lupron shot
    • Chemotherapy
      • Carboplatin & Taxotere
        • 4 rounds with infusions every 21 days
      • Herceptin
        • Infusions every 21 days, still ongoing
    • Radiation
      • Stereotactic radiation therapy

Be able to accept the help of all the people that want to help you. Allow people to take things off of your plate.

Shari S.
Table of Contents
  1. Diagnosis
  2. Treatment
  3. Metastasis
  4. Reflections
  5. Cancer & Relationships

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Diagnosis

What were your first symptoms?

I noticed the lump in December of 2015. It appeared out of nowhere. It wasn’t sore or anything. It didn’t change or get bigger after I started watching it.

I really didn’t have any other symptoms that were apparent. I had decided to get back into shape in the fall. I had done that before and not had any issues. This time around, though, it was harder. It was weird for me.

I did notice a little heaviness in my chest, and now in hindsight, that might’ve been something that was a symptom of the cancer.

How did you get diagnosed?

I had a mammogram the next April. The radiologist saw that mammogram while I was still there and told me I needed to go see an oncologist. 

I had saline implants, so instead of a needle biopsy, they went in surgically for a lumpectomy. It was a same-day surgery. The next week, I got the diagnosis of breast cancer.

Results of the lumpectomy

They took out the lump, and the margins were fairly clean. They said they had good therapies for triple positive and HER2, but then they wanted to check the lymph nodes. They did a PET scan.

The day I went back to the oncologist to start my chemo while waiting on the full diagnosis and staging, I found out it was metastatic and I was stage 4.

That was a lot to take in that day, but the treatment was still the same. My oncologist said it was a lot of information for me to take in on one day and was willing to reschedule my treatment, but I didn’t want to. We were treating it aggressively.

I was there and ready and wanted to get started.

How were you thinking and feeling after the diagnosis?

My original oncologist isn’t my oncologist now. His bedside manner isn’t the greatest. The day he gave me the diagnosis, he kept asking, “Do you have any questions?”

We didn’t know what to ask. Finally, my husband asked about prognosis. He said I had 2 to 10 years, depending on how well my body reacted to the treatment. 

By the time I got home, I’m Googling everything. I read that the next place it can go is to your brain, which the doctor didn’t even mention. I’m thinking, “Is it there, too?”

We hadn’t done any testing for that. My surgeon ordered an MRI for me, and at that point it was clear, so that made me feel better. 

My husband and I just thought of it as a chapter and something we were going to get through. It took a while to realize that this would be the rest of my life. We’ve definitely started living our lives how we want to.

There’s always a reason to not go on vacation or something, but now we don’t let those things get in our way.

»MORE: Processing a cancer diagnosis

How did you tell your loved ones about the diagnosis?

My husband was there with me. He’s always there with me. I have 4 adult boy children. I told them all early that I had cancer and thought it was early stages. I had to call them all back and tell them it was metastatic, and they all dealt with it like they do with Google and research. 

My parents had a hard time with it. One of my first thoughts was, “Am I gonna outlast my parents?” We told our closest family first, and then I had to tell work because I knew I was gonna start losing my hair.

»MORE: Breaking the news of a diagnosis to loved ones

Treatment

What was the lumpectomy like?

It was same-day surgery. It was no big deal really. The biggest thing for me was after surgery and recovery and seeing the indentation in my breast on that side, because now it doesn’t look like the other one. 

The recovery was very quick. We were back in surgery the next week to look at my lymph nodes and to get my port put in.

The lumpectomy was no big deal. It was a couple of stitches, and that’s about it.

What was your chemo regimen like?

I had 4 rounds of Herceptin, carboplatin, and Taxotere. I had infusions every 21 days. I would get infused on Fridays. The first couple really weren’t too bad. They didn’t feel great, but it wasn’t bad.

After the first one, I went back to work on Tuesday, and I realized I had been walking around in a fog all day. We started working from home the week after the infusion. I would go to work when I was able to and just did what I could. 

The CT scan I had at the end of the chemo, that showed significant improvement. The oncologist said I didn’t have to do any more yucky chemo at that point unless something changed, but I did continue the Herceptin once every 3 weeks. I’m still on that.

What was the worst side effect you experienced from chemo?

I never threw up really, but I had underlying nausea all the time. The one time I threw up was after my second round.

I started feeling better, but I did too much. It was 10 p.m., and we had been out. My husband kept saying, “Are you okay? We can’t overdo it.” 

Around that time, I had violent throw up for a couple of sessions, and then that was it. It had to have been that I just did too much.

My body was trying to tell me to rest. After that day, I knew.

»MORE: Cancer patients share their treatment side effects

Did you achieve NED (no evidence of disease)?

By the next March, I had another repeat scan, and I had no sign of any active disease. 

I switched oncologists. Nothing changed in my treatment, but now there’s a person I can talk to about anything. I went in for the results, and he says, “I understand you thought you got the wrong results.”

I asked him what no evidence of active disease meant. I asked if I was in remission, and he said no. I had to remember how much cancer was in my body and that it was stage 4 and metastatic. They don’t necessarily say remission, but they did say no evidence of active disease.

That didn’t mean there was no cancer left in my body, but it just means that everything that we’re doing is keeping the cancer at bay.

It was after that that I started wondering what the rest of my life was gonna look like. That’s when I started to go on Facebook groups and things like that. I tried to find other metastatic cancer patients. 

Metastasis

Metastasis to the brain

In July, I was out for a walk after work, and I started having this really weird thing go on with my ears. It was more on one side than the other, but it was like my ears needed to pop. I knew that wasn’t what it was, though.

It concerned me. It wasn’t going away. The next time I had my regular visit, my oncologist wasn’t there. I talked about it, and I felt like they just brushed it off. I paid attention to it. It didn’t go away.

The next time I saw the oncologist, I told him I was having an issue, and sure enough, I had mets in my brain. I had stereotactic radiation. It was pinpointed to the spots.

How do the brain mets affect you mentally and emotionally?

The brain stuff scares me more compared to anything else. I’ve always worked, and I wonder if this is going to eventually take that away from me.

I worry about my memory. I’m always really paying attention to that, and so far it hasn’t been an issue.

Once I went in and had my first radiation, I found out it wasn’t that big of a deal. I had a headache later on that day, and I was tired until the next day, but other than that, it wasn’t really hard.

After that, I started having an MRI every 3 or 4 months. Before, I was like, “Oh my gosh, what am I gonna do when it goes to my brain?”

Well, now I can go in and get treated with pinpointed radiation, and I know what that’s like. It’s not scary anymore. 

When I hear whole-brain radiation, that freaks me out, but I’m not to that point yet. When I do get there, I know I’m probably done working.

That’s what I gather from other people’s experiences I’ve read about. I try to not get too tied up in it. It can be pretty scary when you read how bad it can get. 

What’s the targeted radiation like?

They do the mask. It’s like going in and having a facial first because they have to make the mask, which is no big deal.

It’s weird, though, because they screw that mask down onto the table. You have to be very still.

I always keep my eyes shut when I go into all the machines, but even still, I felt like I could see some light or something.

The first time is scary because you don’t know what to expect.

It’s noisier than your scans. You’re in there longer. I was in there for an hour and a half like that the first time. It’s scary, but it’s doable. 

The next time I did it, it wasn’t scary anymore. You just have to go somewhere else in your mind to get you through it, and then it’s over.

It’s weird how you get used to all these things you have to do.

Reflections

Do you experience “scanxiety”?

Originally, yes. When I think back on my first PET scan that showed I was metastatic, I wasn’t freaking out waiting for those results.

Maybe that’s because I didn’t know much about it. Ever since that first one that shook me, now the follow-up scans do make me anxious. My husband and I deal with that, though.

First of all, we don’t talk about it. We know it’s on the calendar. We get up that morning, and we both know we’re going to a PET scan before work. We just don’t talk about it.

At this point, I don’t tell too many people I’m having a scan because I don’t want them bringing it up and reminding me.

We do a couple of things that help a lot. We tend to plan our vacations around the time of the scans. Sometimes, we’ll go right before a scan. I might be on a 2-week cruise, and 2 days later, I’ll have a scan. Other times, we’ll schedule a trip for right after a scan. 

We do that because we figure if I get a really bad scan result and I have to change my treatment, it’d be really nice to have a break from life beforehand.

We have gone on a 2-week trip every year since my diagnosis and a bunch of little ones in between. I would rather look forward to the next trip than dread the next scan. That’s helped both of us. It’s always in the back of your mind, but that helps. 

Another thing that’s helped is control. With cancer, you’ve lost control. When I have my PET scan, I have it early in the morning and early in the week.

That way, I know I can get my scan, go to work, and that day after work, I can go pick up my results. That way, I know right then whether I need to be freaked out or let it go. 

So far, things look good, and I don’t have to worry. Same thing with my MRI results. They usually pop up on my portal the same day if I get them done early.

»MORE: Dealing with scanxiety and waiting for results

A “new normal”

It probably took me more than a year to get there. You read people talking about a new normal and how to find it, but for me and how I choose to deal with things, it took me a while.

It was hard for me when my hair started coming back and people didn’t think I was sick anymore.

They started saying, “Shari is a survivor!” Am I? I like to think of myself as a thriver, but I guess as long as you’re alive, you’re surviving. 

Dealing with people thinking you’re fine when you’re not just because you don’t look sick anymore is really frustrating. I’ve gotten really active on social media because of that.

This isn’t just about me. This is about anybody that has any kind of illness where they don’t look sick. There are so many kinds of cancer. Not all chemo makes you lose your hair. You don’t barf with every chemo. Even if it does, there’s a lot of nausea meds. 

I’ve done a lot of educating people because of this and that mindset shift. I’m an open book because I don’t want people to be naive.

I’m optimistic, but I’m realistic. I never know what the next scan holds or where I’ll be in the next 2 years.

If I go into remission — if someone wants to say it that way — fine, but I know it’s coming back. Don’t tell someone they’re cured, because the percentage of recurrence is so great.

Anybody who tells someone that they’re cured and their cancer is 100% not coming back is a liar. They can’t stop cancer yet, and there will be a cure when they can.

What has been the hardest thing for you mentally and emotionally?

The fact that people don’t know that I’m not fine. For a long time, I was really scared. Meanwhile, people think I’m cured and fine because I’m walking around with hair. Well, I’m also walking around with cancer in my brain.

When I realize that people still don’t get it, it’s hard to deal with. I used to get kind of pissed off about it, but I don’t anymore.

When someone would say, “This is Shari. She’s a breast cancer survivor,” I’d be like, “Wow they still don’t get it. How many times do we have to say metastatic?”

I don’t act like I’m sick, but I am sick. My life has completely changed because of it, so I don’t know how people can’t understand that.

You never know what someone is going through.

Before I got sick, I don’t think I had much empathy for someone who was going through a chronic illness of their own. That included my own mother.

Once I went through chemo, and even since, I realize now that life changes drastically because of illness. I’m much more empathetic now towards people because of that. 

Can you talk about the hair loss?

I knew I was gonna lose my hair around 2 weeks after my first treatment. I ran my hand through it because it felt really dry, and it started coming out.

I made plans with my girlfriends. We had a shave party in my backyard 2 days later. I found out that my head is perfectly shaped.

I put a wig on that night, took it off, and never wore it again. I either wore hats or nothing.

Everybody gave me scarves, but I didn’t like them because they just made me look like a cancer patient. I didn’t like that. I didn’t look like me.

I shaved my head on Saturday and went to work on Monday with nothing. That’s when everyone knew something was going on.

»MORE: Dealing with hair loss during cancer treatment

Do you have advice for other people who are going to lose their hair?

Your hair is nothing. It doesn’t make you who you are. It’s what’s inside that makes you who you are. Your hair does grow back, and mine has actually grown back thicker. It grows back a lot quicker than you would think.

If you’re comfortable with a wig, wear one. If not, don’t. I had baby-fine hair and used to hate that. I have a video of the night we shaved my head. I have another one where I’d been without hair for 8 weeks or so, and I said something like, “I always talked really mean about my hair.”

Now, I’m like, “Hey, whatever you want to look like, go for it, hair. Whatever you’ve got.”

Can you talk about self-advocacy?

I didn’t really advocate for myself with the first oncologist much. I did ask about my brain stuff, and he said, “No, we don’t do an MRI unless you’re having symptoms.”

Then I saw my surgeon at a follow-up, told him what he had said, and he said, “I’ll order one for you.” The radiation oncologist said the same thing. 

When my oncologist saw the results, he had a very “I told you so” attitude about it. I just said, “Yeah, it sure is nice to have peace of mind.”

I was going to worry, and then I didn’t have to because it came back clear. I was taking control of a situation that was going to keep me up at night. 

Months into it, I started thinking, “Can I fire my oncologist?” I knew I was going to be seeing him for the rest of my life. The only reason I was going to see my oncologist was because I couldn’t get in to see the other one for 8 weeks. 

I thought since I was going to be seeing him forever, I’d like to be able to see someone who cared about me and knew me. Every time my new oncologist walks in, he has something kind or helpful to say to me.

I consider him a friend. I’m a patient to him, and I understand that, but I see him as a friend. I never felt that with the first guy. I made the right choice.

»MORE: How to be a self-advocate as a patient

What advice do you have for other patients on advocating for themselves?

It’s all about how you ask questions. For example, I was on a Lupron shot. That medicine caused me so much pain in my joints. I couldn’t get down on my hands and knees to do yoga to try to stretch things out. 

It took me a while to figure out that the Lupron was the culprit. My quality of life was declining because of it. I started reading up on it and what to do.

I asked my current oncologist one day, “Can’t we just take my ovaries out so I don’t have to take the shot?”

He said, “If you had a genetic mutation, then I would say yeah, but since you don’t, no, there’s really not a point.” 

I didn’t get the answer I wanted. A while later, I was still having pain. I said, “What do we need to do for me to get my ovaries taken out?” He said, “You’ll need to do X, Y, and Z.” 

3 months later, the ovaries were out. It was a simple surgery. By a month after that, there was no more pain.

It was all in how I asked the question. When I do have questions, I try to go in with the right words. If I don’t understand the medical terminology, I’ll ask him to explain it to me a little bit so I can ask what I really want to ask.

A lot of times, if you can come in talking their talk a little bit and be an educated patient, that will get you the answers you need. 

Living with cancer as a chronic illness

During chemo, it’s really in your face because you’re so sick. When I was that sick, I realized how many little things I took for granted. I realized how thankful I was for certain things. 

Then I started to feel better, and I got away from it again. I got back into my life. I realized I really like the person who was so vulnerable and so thankful for so many of those things. 

It’s about remembering that. I think of it as waking up in the morning and being grateful for getting to go to work, because there are people who wake up and can’t get up and do anything.

Cancer & Relationships

How do you and your husband lean on each other?

If I need to talk about something, I tell him I need to talk. He may not want to talk about it, but if I need to, I let him know I need to.

I talk, and I make sure he hears me because both of us are going through it, and that’s that.

I think it takes a while for the patient to realize that the caregiver is dealing with just as much. It might even be harder for them sometimes.

I’m the one that’s going in for everything, but he’s just as scared of losing me as I am of dying. The fact is the person that’s dying is gone, but the person that stays is the one that has to deal with everything. 

You don’t figure that part out for a while. When you realize there’s 2 sides to all the crap you’re going through, it helps put things in perspective. 

»MORE: 3 Things To Remember If Your Spouse Is Diagnosed With Cancer

What advice do you have for other married couples going through something similar?

Go to somebody to talk. You need to see a relationship therapist. A man needs to hear the reality of what happens when a woman loses all her hormones.

There are still ways to find intimacy in a relationship, but you need help finding those ways. You need to know that going into it so you can start preparing and shifting.

What helped you through the hardest times?

During those first chemo treatments, I would have my husband just talk to me. He would talk to me about a trip we would take when I was feeling better.

After I found out I didn’t have to be on any more chemo, I looked at my husband one day and said, “I thought we were gonna plan a trip.”

That’s why we planned our first one, and we haven’t stopped. It’s a distraction. It gets us to do all the things we always said we wanted to do. It’s something fun and positive to think about rather than the what ifs. 

The other thing is when I feel sorry for myself, I think of how much worse it could be. I would see people in the chemo room who were sicker than me, younger than me, or older people would be talking about hospice. 

As soon as you have a story, somebody else somewhere already has a worse one than you. It’s a lot of wasted energy to sit there and feel sorry for yourself when it could be so much worse.

I took care of funeral arrangements and a will, which is something we had never had to think about doing, but now it’s taken care of. I don’t have to worry about it anymore. Dealing with those kinds of things and knowing now that they’re done helps, too. 

»MORE:  What kind of support cancer patients say helped the most

Being a parent with cancer

If my kids had been little and at home, I don’t know what I would’ve done. I was grateful that my kids were all out of the house. They’re all boys, and I think if they had been girls, they would’ve been more consistently involved. Whereas, with boys, they opened the door, asked questions, and then shut the door again. 

My heart goes out to women whose kids are younger. I’ve already got to see one of my kids get married. I have a grandkid. I’ve gotten to experience these things that other women might not get the chance to. My heart goes out to them. 

Last Christmas was hard because all my kids came home for the holiday. They’re all adults and have their own lives, but it worked out that they all got to be there. I was able to have all 4 boys home. 

I did every single tradition we’d ever done, and I did it on purpose because I don’t know for sure.

I was thinking, ‘Am I going to have them all home again? Am I going to feel up for it again? So, I made the most of it.

Sure enough, I heard from each one of them how much they enjoyed it. It was the little things they appreciated so much. Other than that, things are the same. They’re boys. They don’t call their mom as much as they should. 

»MORE: Parents describe how they handled cancer with their kids

Advice for someone with similar diagnosis

You might feel like you have to do everything really quickly. Everyone tells you you need to get more than one opinion, but you’re so scared that you feel like you have to do it right then.

You don’t have to do it that fast. If I had it to do over again, I would’ve probably taken a little more time. I could’ve probably waited the 8 weeks and gone to the good oncologist first.

I probably had the cancer in my body for years before it finally came out on my breast, so what was another 8 weeks really going to do?

Slow down. You don’t have to rush into decisions. It’s not going to make you die quicker because you wait for an appointment you’re comfortable with.

Whether you do it or someone else can do it for you, take care of it. The more you worry about things, the unhealthier you’re going to be.

Walk for 30 minutes a day, whether you feel like it or not. Things like that. Do anything you can do to keep feeling normal.

Be able to accept the help of all the people that want to help you. Allow people to take things off your plate. If something is bothering you, find a way of taking care of it.

Thanks for sharing your story with us, Shari!

Inspired by Shari's story?

Share your story, too!

Invasive Ductal Carcinoma Stories

Amelia

Amelia L., IDC, Stage 1, ER/PR+, HER2-



Symptom: Lump found during self breast exam

Treatments: TC chemotherapy; lumpectomy, double mastectomy, reconstruction; Tamoxifen

Rachel Y., IDC, Stage 1B



Symptoms: None; caught by delayed mammogram

Treatments: Double mastectomy, neoadjuvant chemotherapy, hormone therapy Tamoxifen
Rach smiling against fall leaves

Rach D., IDC, Stage 2, Triple Positive



Symptom: Lump in right breast

Treatments: Neoadjuvant chemotherapy, double mastectomy, targeted therapy, hormone therapy
Caitlin

Caitlin J., IDC, Stage 2B, ER/PR+



Symptom: Lump found on breast

Treatments: Lumpectomy, AC/T chemotherapy, radiation, hormone therapy (Lupron & Anastrozole)

Joy R., IDC, Stage 2, Triple Negative



Symptom: Lump in breast

Treatments: Chemotherapy, double mastectomy, hysterectomy

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