Tag: chemotherapy

Michelle’s Recurrent Stage 1 Bladder Cancer Story

Post author By Katrina Villareal
Post date September 18, 2024
No Comments on Michelle’s Recurrent Stage 1 Bladder Cancer Story

October 18, 2024

Michelle’s Recurrent Stage 1 Bladder Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Michelle’s experience with recurrent stage 1 bladder cancer started with intermittent blood in her urine, which led to multiple urgent care visits, where she was initially misdiagnosed, and eventually a diagnosis of papillary urothelial carcinoma. Upon diagnosis, she underwent TURBT surgery to remove the tumor and then chemotherapy.

Despite multiple rounds of chemotherapy, Michelle’s cancer recurs within three to six months after stopping treatment. Her doctor suggests ongoing monthly maintenance chemotherapy, but she negotiates for less frequent sessions due to the harsh side effects. She became vigilant about recognizing symptoms of recurrence, helping her manage the chronic nature of her cancer.

Facing the possibility of losing her bladder, she expresses a preference for an Indiana pouch, influenced by her friend’s experience and her desire for a better quality of life. She has already undergone surgery to improve her chances of adapting to the Indiana pouch, demonstrating her proactive approach to managing her health.

Michelle emphasizes the importance of self-advocacy in medical care, seeking multiple opinions, and making informed decisions. She acknowledges the emotional toll of living with cancer and stresses the importance of mental health care and self-care.

Name: Michelle R.
Age at Diagnosis:
- 43
Diagnosis:
- Bladder Cancer
Staging:
- Stage 1
Symptoms:
- Irregular occurrences of seeing streaks of blood in urine
- Specific type of pain when bladder is full
- Unexplained weight loss
- Urinary urgency
- Malaise
- Fatigue
Treatments:
- Chemotherapy: gemcitabine
- Surgery: transurethral resection of bladder tumor (TURBT)

Thank you to Johnson & Johnson for its support of our patient education program! The Patient Story retains full editorial control over all content.

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

I had been experiencing some streaks of blood in my urine… It was very random and not consistent at all.

Introduction

I live near Atlanta, Georgia. I’m a mother to an adult son and an auntie to my nieces and nephews. I have two brothers and a sister. I’m a genetic genealogist. If I’m not working my full-time job, I’m working my side business, Bless Your Vibes LLC.

I have recurrent stage 1 non-muscle-invasive bladder cancer (NMIBC). I’ve had nine recurrences, countless surgeries, and chemotherapy. As long as I catch it before it invades the muscle, I’ve been told I can deal with this for the rest of my life.

Pre-diagnosis

Initial Symptoms

I had been experiencing some streaks of blood in my urine. It would happen for a day or two and then nothing for a month, and then it would happen again. It was very random and not consistent at all. I already had a hysterectomy several years prior, so I knew it wasn’t related to that. I didn’t have any pain nor symptoms of a urinary tract infection, so I immediately thought about kidney stones.

Going to Urgent Care

When I went to urgent care, they did a culture and said, “You don’t have any infection, so it’s probably kidney stones. We’re going to give you antibiotics and send you on your way.” I went to urgent care a total of four times from June 2017 to February 2018.

She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding.’

The last time, I did a televisit. I knew they were going to give me antibiotics because it was the same old story, so I planned to call them during my lunch break. The doctor I spoke with during my televisit was more thorough than any other doctor I’ve ever had in my life.

She asked me questions and didn’t allude to any infection or kidney stones. She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding. Don’t say ‘blood without pain.’” She stressed that to me for whatever reason.

Seeing a Urologist

The urologist still didn’t indicate anything. They said, “We’ll try to figure out what’s going on.” I had a CT scan and some urine tests, but that was about it.

Diagnosis

Getting the Diagnosis

The urine test results came back through my patient portal and said I was positive for papillary urothelial carcinoma. I knew what carcinoma was, but I didn’t know what papillary urothelial meant. I panicked. It was Friday afternoon and everybody’s gone. The only person I told was my boss at work because I had to leave early.

First thing on Monday morning, I called the office and left a message. They called back and said, “We can’t tell you anything. You need to come in to see the doctor.” I couldn’t go in until later that week, so I had to sit with it for a whole week.

When I went in, the doctor was so matter-of-fact and cold. He started talking about treatment. I said, “Stop. Do I have cancer?” He looked at me like I should already know. I was numb. He said, “Based on the CT scan, it looks like there’s a large mass. Normally, we would go in with a scope and then proceed with surgery. But since we know that it’s cancer, can we bypass the scope and go into surgery?” I said yes because I wanted this out of me, so he scheduled it for two weeks after.

I had one friend… She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me.

Treatment

Discussing the Treatment Plan

With bladder cancer, you have high-grade or low-grade, muscle-invasive or non-muscle-invasive. My doctor pulled out a treatment chart and it showed everything. It was pretty clear-cut. It showed the schedule of treatment, which starts from removal or transurethral removal of bladder tumor (TURBT), and then it goes through the surgeries and the types of chemotherapy.

Preparing for Surgery

I remember trying to prepare myself. I was freaking out because up until the night before, I had no ride to my surgery. My son didn’t have his license yet and all of my friends worked. I didn’t have any family to help. I literally had no one. I started calling people that I casually knew and nobody stepped up.

Then I had one friend who I called and I was telling her about it when she said, “Why didn’t you ask me?” I didn’t even think about it because she’s disabled and she turned out to be the one who would step up. She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me. It humbled me. I didn’t even know then all the friendships that I was about to lose over this, but from back home, she’s the only friend I have left. I’ve lost all of them.

I went into surgery and at the time, I felt like I had a lot of people depending on me, so I told the doctor, “I’m not just another patient. Treat me well. Do me right because I have a lot of people who depend on me.” I felt he was offended by that because he said, “I treat all my patients the same.” He was very dry.

I asked, “What’s the best-case and worst-case scenario?” He said, “Best-case scenario is I get it all, you go home today, and you rest. Worst-case scenario is you wake up and have a bladder bag.” He told me this right before going in and I was in complete shock. I couldn’t do anything else but pray.

I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me.

Surgery

After surgery, my friend was the first person to greet me coming out. She was in the recovery room and as I was waking up, I felt that he got it all and I was going home. I believed it in my head. After I got more coherent, I asked the nurse, “Did he get it all?” And she said yes.

I went home to recover, took the next day off, and went back to work the following day. It was like I had cancer and then I didn’t have cancer in that short time. I didn’t know at the time that it was going to happen nine more times over 6 ½ years.

One of the first things this doctor told me was, “I have patients who have been coming to me for 20 years. I go in and get it out, and they go about their way for 20 years.” At first, I was upset that he said that, but later, I was glad because that prepared me. He indicated that it was going to be normal to keep coming back.

Not every case is chronic, but I like to know things because I like to be prepared. It helped me put it into my head that I’m going to have to deal with this. On one hand, it helps me. But on the other hand, I don’t feel like I’ll ever have that winning moment. It’s going to be a lifetime thing to deal with.

Recurrence

I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me. It looked like a succulent flower because it was so tiny and had little shoots. I’m lying there looking at the screen, thinking, “How could something so beautiful be so deadly?” Then he said, “We can take care of this right now.”

I asked him, “What does this entail?” He said, “We pluck it off.” Then through the screen, I saw this little grabber thing come through and he plucks it. It was very surreal. You go from cancer to no cancer because once that’s gone, you have no evidence of disease.

If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.

Moving to Atlanta

I was moving from Ohio to Atlanta, so I asked him what I needed to do. He said, “Come see me one more time before you go.” I did that and I was clear, so I was okay.

I started searching for the top urologists, top oncologists, and the hospital networks in the area. I did a lot of research and called some of the hospitals, which included Emory because they were in my insurance network. I asked, “If you had a serious problem with your bladder and you needed a urologist, who would you go to?” They told me about this doctor and as soon as I connected with the office, it was so different.

This doctor is a urologic oncologist and supposedly the best in the network. I explained my situation and gave my brother’s address since I didn’t have my new address yet. They emailed me papers and everything. There was such an urgency to be seen and that made me feel very comfortable and that I would be taken care of.

When I went, they said, “We’re not even going to have a consultation. We’re going right into cystoscopy. I want to see what’s going on there.” I’m glad they did because that was my fourth growth and it had taken off. It was very large and from the pathology report, it was high-grade.

After that scope, they said, “We’re going to do the surgery and we’re going to do your chemo,” so I did that.

During my follow-up, I didn’t see the doctor, but I saw someone else from his team. I had been taking cues from my first doctor that it wasn’t a big deal. She was the first one who looked me in the face and said, “Do not put this off because you can die from this,” and that was the first time anybody said that I could actually die from this.

Up until then, it was very casual. From that point on, I took everything very seriously. If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.

There are specific symptoms that I now recognize when I have active cancer.

Being Aware of Symptoms of Recurrence

I’ve had this nine times now, so I’ve paid attention to my body and my symptoms, and I started recognizing patterns. When I have active growth, there is a very specific pain that I feel in the morning when my bladder is full. Once I empty it, the pain goes away. When I feel that, I know I have a growth.

I’m a plus-sized person. I’m fairly large. But before I was diagnosed, I lost a lot of weight. I lost 60 lbs and that was one of my other symptoms before I was actually diagnosed. I had unexplained weight loss and I had been trying to lose weight my whole life.

Then I have a lot of sense of urgency to go to the bathroom, like when you have a UTI. I can’t wait for too long because the fuller my bladder, the more it hurts. Then I have a general feeling of unwell and being tired a lot. There are specific symptoms that I now recognize when I have active cancer.

One time, I was having bad pain in the morning. I had a cystoscopy not even a month prior and he said, “It’s probably because you’re still healing.” I said, “No, something’s going on.” He got me in and sure enough, it was another growth. This doctor trusts that I know my body and he’s fully on my team.

Maintenance Chemotherapy

For the last recurrence, we know that chemo worked. I got chemo for a whole year and didn’t have any growth, but when I stopped, I had another growth within three to six months, so I had to have another surgery and chemo.

I told him that it seems my growths occur between the three- and six-month mark, so he wants to introduce another chemo to mix with the original one I was taking and do monthly maintenance chemo probably for the rest of my life. I’m not down for that, so I said, “That’s hard on me. What if we go every two or three months?” That’s not even what the board recommends, but he’s willing to consider it.

He said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.

Side Effects of Chemotherapy

The chemotherapy drugs are all different. I get nauseous, but I don’t get sick. I have a little thinning of my hair, but I don’t go bald. I feel overall icky and tired. I go through hot and cold flashes, low-grade fevers, and night sweats. Those last probably about five days before I start to feel a little bit better. But when I went for the whole year, the longer I was doing it, the worse I felt every month.

It started like I was having aphasia or problems with recalling certain words. My memory wasn’t as good. I was having trouble concentrating and trying to process things. It was more complicated. I still have that problem where I trip on my words sometimes. It got progressively worse the longer I was doing chemo.

Taking a Chemo Break

I was supposed to do it until the end of the year, but I asked him, “Can I take a break for a month?” Since I had the six-week course before the monthly sessions, he said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.

It’s going to be a cat and mouse game, and the end result is a ticking time bomb. I’m going to do whatever I can to avoid losing my bladder and as long as I can tolerate the chemo. If it gets to the point where I can no longer take it, then I’ll probably have my bladder removed. There aren’t very many options for that.

Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that.

Facing the Possibility of Losing Her Bladder

There’s only one option that I would like. My best friend had urethral cancer, a rare form of it, and she got an Indiana pouch and that to me is the most tolerable. I don’t want to live with a bladder bag. It’s a decision I made before I met her. The only options I knew of were a neobladder or ileostomy bag, and I didn’t like either of those options because if the neobladder doesn’t work, then all you have is the bag.

I’m older and my child is grown and independent. I’ve suffered a variety of things throughout my life. I’m a chronic pain patient and with where I’m at in my life, I didn’t want to suffer, so I made the decision. Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that, and that was hard for other people.

I didn’t really talk about it, but I mentioned to people close to me, “Spend time with me now.” I didn’t come right out and say it, but I would drop hints. Then I met my friend and she showed me that and for the first time, I actually had hope that I could live with this little pouch and do the catheter. I could deal with that. Now that’s where I’m at. If I have to lose my bladder, I want the Indiana pouch.

When I was first diagnosed, I was fortunate to get involved with a cancer support center in my old town. I started going to support groups and would see there was only one other person with bladder cancer and he had a bag. He was pretty matter of fact about it and he was happy. He didn’t go through what I did, but his was found at a later stage.

You could tell which ones had a good support system and which ones didn’t. The ones who had a good support system wanted to fight and they fought until the very end.

At the time, I thought I had a good support system, so I was ready to fight. There was a woman who came in who had been diagnosed with stage 4 and it looked like there was no hope for her, but she had such a good support system. Her decision was to not do any treatment. She was going to live the rest of her days.

I remember that meeting because that’s where we got into quality versus quantity. She said, “Why would I prolong my life with the extra time I have being miserable, rather than have a shorter life and be absolutely happy and at peace with it?” That hit me so deeply because I wasn’t even nowhere near where she was as far as stage, but it put in my head that if I ever get to that point, that’s what I would do. It allowed me to process those choices and come to terms with it.

I knew people wouldn’t understand that. Even to this day, when I talk about it, people would say, “Why would you even think like that?” And these are people with cancer. You’re not me. You’re not going through what I do.

Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.

Shared Treatment Decision-Making

My doctor is still pretty dry, but I’ve grown to appreciate him. I had a different surgery a few years ago and prior to that surgery, I let him know right away, “I’ll do whatever I need to do to keep my bladder, but if it comes down to losing my bladder, I will pass. I want you to know that’s where I’m at.” He respected that and said, “I’ll do whatever you want.” I appreciated that for a variety of reasons. He must have written it in my file, so he knows that when I come in, we have the surgery and then chemo. It’s become routine now.

When I had the high-grade recurrence, it got to the point where we weren’t sure and I was scared. I had met my friend by then and brought it up to him. I said, “Can I do the Indiana pouch if I have to lose my bladder?” He said, “Let me see your abdomen.” At the time, I had a B belly, so my waist dipped in and right where the crease was is where the stoma would be. I asked, “How would that work?” He said, “It probably wouldn’t.”

I had this discussion with him. My concern was if I had a bladder bag, every time I moved, bent over, or sat, it would fold over on itself, so it would pinch off the flow. The stickers for the bag wouldn’t stick. I would then have a higher risk for infection and leaks. It solidified why I wasn’t going to live with a bladder bag.

I thought about it and said, “What if I got a tummy tuck to smooth that out?” I’m a bariatric patient too and I had lost some weight. He felt around and said, “If you could get this smoother, I think you would have a better chance,” so I started on that journey to get that done.

I had a panniculectomy, so now I have a big round D belly and I’m comfortable with the fact that if I had an ileostomy bag, I wouldn’t crease anywhere. But then I met my friend and that made me feel even better. Now that I’ve had the surgery, I could live with that. It was important that I had that discussion with my doctor because if he blew me off, then I wouldn’t have made that decision.

At my last visit, I brought up that I’m coming up to seven years. He said, “If you want to remove your bladder, we can do that, but I don’t think you’re there yet. This is all superficial, but I understand that if the chemo’s getting to be too much and doing all this is too much, we can do that. But I remember what your decision was initially.” Whatever I decide, he’s comfortable with it.

Where we left off was, I have to let him know whether we’re going to introduce this other chemo and try a few rounds every three months to see if that keeps it away. I can live with that and that’ll buy me a little bit more time. Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.

Importance of Self-Advocacy

Self-advocacy is absolutely critical. I talk about it on my social media and I have a lot of women sending me messages, not very many men, but I tell them that this doesn’t have to be a death sentence. It’s a health challenge, especially if you have the type that I have.

You have to advocate for yourself and understand what’s going on with you. Ask your doctor. Don’t feel like you’re putting him off. If he or she’s brushing you off, find another doctor. Get those answers and make those decisions.

Don’t let any doctor gaslight you. I’m a big proponent of that. I don’t think I would’ve been like this if it wasn’t for all the other experiences I’ve gone through in my life. It brought me to this point where I can advocate for myself and others.

A lot of people I talk to don’t know how to advocate for themselves. I’ve seen five oncologists, two different ones in the same week. There’s nothing out there that says you can’t go to another doctor. You have to fight for yourself and speak up for yourself.

Handling the Emotional Toll

I haven’t carried myself with grace. I’ve spent a lot of time crying and being angry at everything. Oddly, one thing I never felt was, “Why me? Why did this happen to me?” I don’t know why. I can’t tell you why, but I’ve not handled it very well.

There have been a lot of times that I get depressed. I shut down. I get gripe-y with people. I withdraw. I’ve always been a quiet person. Everybody says you have to remain positive and be positive. In a lot of aspects, that’s true, but you also have to be a realist and allow yourself to feel these feelings to get through them.

My counselor said, ‘Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis.’

Some things that I do that help me is seek mental health care. When I was first diagnosed, I was seeing a counselor and was on anxiety medication. When I moved, I didn’t need those anymore because back then, I had other situations I was dealing with that I wasn’t in anymore.

I practice a lot of self-care. I used to feel guilty about spending money on myself, especially as a parent, but I don’t anymore because it’s vital to my survival and helps me cope after years of dealing with my cancer.

You go through a grieving process too, much like a death. My counselor said, “Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis. You’ll never go back to life before that diagnosis, especially with cancer. You start grieving the loss of that life, so you need to go through all those steps and emotions to get through it.” For a lot of people, that’s hard.

The biggest stigma in the cancer community is to fight it and beat it. Either beat it or you lose. Normally, those are your only options. But when you have cancer that keeps on coming back, you don’t have that. You’re either sick or not sick. You never win. You never go the rest of your life not having to worry about it again. It becomes a part of you and you learn to deal with it. It’s like getting diagnosed with any other type of major illness. There’s before the diagnosis and after the diagnosis. You have to figure out how to live with it. Find a good support system and resources to help you.

Publishing a Cancer Care Book

When I was first diagnosed, there were different things that I had to keep track of. I had a little notebook where I was writing everything down on because I couldn’t keep track of everything, especially once I moved. I had to get new doctors, new patient portals, and new insurance. There was too much for me to keep track of. I found a group and talked to other people about it.

I’m a graphic designer by profession, so I thought about making a book for other people and created a guided journal called Cancer Care Book, which is available on Amazon (no commission is being earned with this link). It’s geared toward women, but men could use it too. It’s for anybody who has cancer but specifically for newly diagnosed people.

There are different sections in it where you can keep track of all your appointments and bills, write things out like a journal, or if you’re an artist, you can draw or doodle. There are coloring pages because I’m a big believer in art therapy.

There’s a section called The Tough Stuff where you can organize your bucket list items and final wishes. They may deny it, but everybody will think about what happens if they die and this is the perfect way. Nobody has to see this if you don’t want to.

If you get so sick and have a caretaker, you can keep track of all the information, like medication, and hand it off to a caretaker. There’s an emergency contact list on the first page, so if something happens to you, people will know who to reach out to. I put everything that I thought I would want when I was first diagnosed.

You can’t take care of anybody else if you don’t take care of yourself first.

Words of Advice

I made a video that showed six things that are key to your survival and the biggest one is early detection. Don’t wait. If you have any kind of symptom or you feel like something is wrong with your body, get it checked out. Don’t put it off. Early detection is key.

Advocate for yourself no matter what. Get those answers and get education.

Find your tribe. Find your support. They’re out there. On my website, I have a Resources page with over 500 websites for all cancers.

Take care of yourself because much like when you’re flying on a plane and they tell you to put the oxygen mask on first, you can’t take care of anybody else if you don’t take care of yourself first.

Anyone who has had a cancer diagnosis needs to get some kind of mental health care to process everything. You can find a lot of help in support groups and support centers, but they’re limited and can only help you so much. If you’ve never seen a counselor or a therapist before, once you get a diagnosis, they should be next on your list of doctors to see.

You have to come to terms with your mortality. A lot of people think they’re going to live forever. You have to shift your thinking. Cancer could take you out, a car accident could take you out, or a fire could take you out. Anything could happen. You need to reevaluate your life and make better choices of what’s important to you and your closest loved ones.

Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.

Thank you for sharing your story, Michelle!

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Lauren’s Stage 4 Breast and Stage 4 Colon Cancer Story

Post author By Chris Sanchez
Post date September 18, 2024
No Comments on Lauren’s Stage 4 Breast and Stage 4 Colon Cancer Story

September 18, 2024

Lauren’s Stage 4 Breast and Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Lauren, from Houston, Texas, is living with stage 4 breast cancer and stage 4 colon cancer. Her journey began in 2014 when, after breastfeeding her second child, she discovered a lump in her breast. As her doctor initially dismissed it as fibroadenoma, Lauren did not undergo further testing. Two years later, she developed pains in her breast and noticed that her left nipple looked strange, and upon further examination, doctors diagnosed her with stage 3 breast cancer. She underwent chemotherapy, a mastectomy, and radiation, followed by hormone therapy for several years.

In 2021, Lauren began experiencing stomach pains and noticed blood in her stool. Following a colonoscopy, she was diagnosed with stage 3 colon cancer after doctors discovered a cancerous lymph node. She underwent surgery and chemotherapy but struggled with side effects, particularly from the chemotherapy drug oxaliplatin. Lauren also began to explore alternative treatments like high-dose intravenous vitamin C and fasting, inspired by research on treating KRAS mutation cancers, which are known to be particularly aggressive and difficult to treat.

In 2022, after experiencing further stomach pain, a PET scan revealed that the cancer had spread to Lauren’s abdominal lining and spine. Her oncologist gave her a terminal prognosis, estimating that she had around 10 months left to live. Desperate, Lauren intensified her vitamin C treatments, fasting, and other therapies. Remarkably, by December of that year, her PET scan showed no evidence of disease, although her doctor cautioned her to remain vigilant.

Lauren’s journey took another turn when a biopsy revealed that her spinal cancer was not colon cancer but a recurrence of her breast cancer, which had resurfaced and spread while her immune system was weakened. Although she has had to deal with recurring spots of cancer in her spine, Lauren has successfully managed her colon cancer, with her tumor markers remaining low. She credits her alternative treatments, alongside traditional therapies, for keeping her cancer at bay.

Now, Lauren undergoes PET scans every 3 months to monitor her condition. While managing cancer has become part of her daily life, especially with gastrointestinal side effects from her colon surgery, she remains proactive in her treatment and hopeful for the future. Despite the challenges, Lauren emphasizes the importance of staying informed, advocating for oneself, and maintaining hope, especially for those dealing with KRAS mutation cancers.

Name:
- Lauren B.
Age at Diagnosis:
- 31
Diagnosis:
- Breast cancer
- Colon cancer
Staging:
- Stage 4 for both
Initial Symptoms:
- Lump in left breast that grew
- Strange appearance of nipple
Treatment:
- Surgery (radical left mastectomy, lymph node removal; removal of part of colon and appendix)
- Chemotherapy (Doxorubicin and Taxol; Oxaliplatin and Xeloda)
- Radiation therapy
- Hormone therapy
- Complementary treatments (fasting, high-dose intravenous Vitamin C)

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

Thank you for sharing your story, Lauren!

Inspired by Lauren's story?

Share your story, too!

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

Table of Contents

Introduction
Pre-diagnosis
Discovery, Diagnosis and Treatment
Remission
What helped Mike during his treatment
Lessons Mike wants to share

Everybody has a different journey.

It is your game… play it the way that you need to. You will know when to do it.

You know it is your game to play.

Introduction

My name is Mike.

I live in Rincon, GA, which is about 20 minutes outside of Savannah, GA. I’m originally from Savannah.

I had non-Hodgkin diffuse large B-cell lymphoma. I have been in remission now for 3 years.

Pre-diagnosis

My symptoms, well, I did not have any symptoms. I guess I may have, but I didn’t notice, and it was all found by chance.

We moved into a new house. I bought some big pots to put out in front, and you must bear hug them to get them off the truck, and that is what I did. I thought that I had pulled a muscle in my back.

So, for about two weeks, I dealt with the pain of it, and it just kept getting worse and worse. The week that I was diagnosed, the pain got so intense that I had thought I was having a heart attack.

We called the ambulance and took a little ride to the hospital. It turned out that my heart was fine, but I still had pain, so a couple of days later, on a Thursday, I went to a chiropractor.

When he adjusted me in the chest area, I had a shock go from the tip of my head to the bottom of my feet. By the time I had left his office, drove a mile down the road to Walmart, and got out to walk in, I could barely walk. I went back to him that afternoon, and he just did not know what was going on. That evening, when I got home, I had to use a walker.

On Friday, the day afterwards, we set up an MRI with the neurosurgeon that I had used before. But I could not do it, because I could not lie down.

Saturday rolled around, and my wife, who is a cardiac nurse, set up for me to go to the local hospital here in Effingham County, where I successfully got an MRI.

Discovery, Diagnosis and Treatment

Surgery

Well, in the MRI, I did not know it then and there because no one told me, but they saw a tumor on my spinal cord.

On Monday, December 21, 2020, I checked into the hospital. On Tuesday, I had surgery, and stayed in the hospital overnight.

Then we went down to Tybee because we had rented a house down there for Christmas.

When we were down there, the tumor was sent off so they could check it to see if it was cancerous. However, the surgeon had already known that it was; I guess he had done so many surgeries like that, that he could already tell if it was cancerous or not.

A couple of days later, we had a meeting with an oncologist to discuss my treatment. The combination of drugs I would be taking is known as R-CHOP.

It turned out to be a pretty rough treatment.

Chemotherapy

The first treatment was on that infamous day of January 6, 2021, and everything was going on in Washington, D.C.

Not only that, but Covid was going strong, so no one could go with me to have chemo, and so I was kind of on an island by yourself. I got used to it–and as you’ll see, I wasn’t actually left alone.

The people in the hospital who administer the drugs are wonderful. They have a big heart for people like us and they made it easy. Of course, wearing a mask the whole time you are there is no fun, but they did make it very easy.

I had 6 rounds of R-CHOP every 3 weeks.

Effects of the treatment regimen

During the first round of chemo of R-CHOP, I was told that it was so important to stay hydrated. So when I would get home after treatment, I felt like I would almost drown myself because I had drunk so much.

I had been told that one of the side effects of my treatment regimen would be nausea, but it was a pleasant surprise that that was not the case for me. I think I had needed to take only 2 nausea pills the entire time, which was awesome.

Another thing too that was a bit unusual was that I actually gained weight during my treatment. People normally lose a lot of weight, but I actually gained 30 pounds.

I also lost all my hair after the first rounds of chemo. That was a big thing for me.

Additionally, I had intense leg pain after my infusions. They gave me Neulasta for that, and that is something that I still struggle with today because of the neurological damage done to my system.

I was also informed that I needed to watch out for the third round of chemo. I go to church with a guy who said to me, “Wait until your third round.” But it was not the third round that kicked me in the behind; it was the fourth round. It just wiped me out.

I would have a treatment on a Friday afternoon, and it lasted about six hours. I would get home, and I would be wired that whole afternoon and all night. Then I would not go to sleep until about noon on Saturday. I would just be wired, not hungry but we did have somebody at the church that would make me some vegetable soup and banana bread, and that helped me out tremendously for a bunch of days after I had my treatment. The part of being wired, that was always the worst part of it. Then, by Tuesday, I would be able to go back to work.

I am in sales, and I do not see how anybody in a factory job or anything like that could go through it and keep a job. That being said, I was still able to function for the most part while I was on chemo.

As a matter of fact, I continued to work the whole time I was being administered R-CHOP. On days that I did work, sometimes it was a pain, and on the whole I felt like I was in a cloud. I was still able to work, though, which is great.

I complained one day to the neurosurgeon about why I was not walking better, and he commented that I should feel blessed that I was even walking.

Remission

After I had finished my treatments, I went for a PET scan.

It showed 2 lumps in my stomach that were lit up. My oncologist said, feel free to search for a second opinion. So we did that.

My wife, the nurse that she is, spoke with my sister and a good friend of hers whose brother is an oncologist in Atlanta, and he suggested going to Moffit Cancer Center down in Tampa.

We went down there, and he did some tests that my oncologist here did not do.

All the tests determined that the lumps were not growing at all.

So this means that the treatments were successful and my cancer was in remission.

I have been in remission now for 3 years. I go every 6 months to have a check-up.

PTSD

I may be cancer-free now, but there are moments that I have PTSD. I experience some triggers that remind me of things that were not so pleasant during my treatment time.

Just as an example, I have some photos of the Red Devils, part of the chemo that they call the Red Devils. Those are potent. Anytime I look back and see the pictures of those, I can almost taste them. They were that bad.

That being said, though, I can say that I’ve come away stronger.

Before all this happened, I could not take an MRI, PET scan or CT scan or anything like that without being sedated. Now I have learned how to deal with everything like that.

I think the last MRI I had lasted about an hour and 30 minutes, and it was not bad at all. Getting my port taken out was easy. I am not afraid of needles. I am not afraid of MRI machines, PET scans, or CT scans, either. Not any more.

Looking forward after remission

My experience has changed my life.

You start to think more about your family than about material things that do not really mean a whole lot. The shoes, the watches, the shirts, you know—they do not mean that much.

I am semi-retired now, and cannot wait for the time that my wife will retire, too. As I mentioned earlier, we had built a house about six months before I was diagnosed. We had just moved into the house and were getting things done around the house, and then I was diagnosed with cancer. So, there were a lot of things put on hold, but a lot of those things just do not mean anything to me any longer.

The only thing I want to do now is buy a motorhome and travel. Have a smaller house and travel back and forth. My wife is not quite on the same page with me, but she is getting there, and so I am hoping that that dream will come true. All she wants to do is spend time with our 3 grandkids, which of course is wonderful also.

We have done a lot in our life together. We’ve been to the Caribbean a few times and rented boats and sailboats. We spent time out, about ten days, on a sailboat sailing around the British Virgin Islands, which was nice.

What helped Mike during his treatment

Wife and family

I have nothing but praise for my wife, who is a terrific nurse, and she took such good care of me while I was in the thick of treatment.

She was my rock when I needed a rock, gave me my pills, set my appointments, cooked supper. She was beside herself because she could not go to me for my treatments. But she was still able to drive me to them and drive me home.

With her being a nurse it just came naturally. I did not have a bell to ring, but she was always there for me and was willing to do anything that I needed. She took over.

It’s so important to have somebody to talk to; there were a lot of times that I would get upset, it is an emotional time, and when you are diagnosed with cancer, it tugs at your emotions. So, there were many times that my wife and I would sit there and talk about things.

Anytime that I was uncomfortable, and there were a lot of times my back was hurting from the surgery, I have a 12-inch scar in the middle of my back where they took the tumor out. So, to make me more comfortable, she rubbed my back, her and the grandkids too. They would get a rolling pin and roll it up and down my back, and that always felt good.

I’m well aware that it was no walk in the park for her. She had to take care of the house and its day-to-day concerns. That right there is a huge burden, paying bills and things like that. That weighs heavy on those people and the caregivers.

Faith and friends

My faith and our church family have also really risen to the occasion and have really helped me through this whole thing. A big part of how I have been able to deal with the last three years is because of my faith.

Our faith in God got us through these tough times. I talked to God a lot during those days, and I had peace. I would not say that I was worried because I looked at it this way: If I go first, I win.

You know, sometimes people say it takes a village, and it really does. I just thank the Lord.

I would not say that I was worried because I looked at it this way:

If I go first, I win.

Lessons Mike wants to share

Be mindful of the caregivers too

When I know that somebody has cancer, it is not only “How is that person doing?”, but also “How are the caregivers doing?”

You know, because it is tough on them, and you can see it if you are around people enough. They need prayer, too. They need just as much prayer as the sick person.

My advice to the patient would be to be patient with the caregiver. You are both walking down a road that you have never been down before, and they are going to think one way, and you are going to think another way, but always remember to be patient.

You know, we all run out of patience from time to time, but for me, as a patient, getting upset with my caregiver, I did not like that, and I apologized because, yes, it is a tough thing to go through, and I am the one going through it, but they are going through it also.

They need their time, and they need their respect, and as patients, we have got to give it to them and love them because they love you the best way that they can. We have got to love them the best way that we know how.

Without them, it would be a lot harder. It is hard enough, but going through that time without my wife as my caregiver… I do not know if I would have made it.

We are all on different journeys

My final message would be: everybody has a different journey.

You can ask a question about how you get through chemo and all that, but I think everybody is going to have a different answer. My answer would be: it is your game; play it the way that you need to.

If you feel like doing something, do it. If you are tired, and that is another thing, fatigue, good grief, the fatigue is just unbelievable, and if you do not feel like doing something, do not do it.

Eventually, you will have to get up and do something, but you will know when to do it.

You know it is your game to play.

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Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL

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Tags chemotherapy, dlbcl, non-hodgkin lymphoma, r-chop

Chemotherapy Endometrial Cancer Patient Stories Radiation Therapy Surgery Treatments Uterine

Lexie’s High-Grade Endometrial Stromal Sarcoma Story

Post author By Katrina Villareal
Post date August 15, 2024
No Comments on Lexie’s High-Grade Endometrial Stromal Sarcoma Story

August 15, 2024

Lexie’s High-Grade Endometrial Stromal Sarcoma Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Lexie’s life changed dramatically when she was diagnosed with cancer three times. Her symptoms started with a prolonged period and severe cramps. Initially misdiagnosed, she eventually discovered she had cancer. The first treatment involved surgery, but subsequent relapses required more aggressive treatments.

During her first relapse, severe cramps led to the discovery of a softball-sized mass. She underwent surgery and chemotherapy, maintaining a positive attitude with support from her husband and family.

Later, respiratory issues revealed another mass in her chest. Proton beam radiation followed by chemotherapy initially seemed successful, but cancer spread to her lung lining, necessitating further treatments.

Throughout her journey, Lexie faced severe side effects from chemotherapy. She learned the importance of self-advocacy in medical care and relied on her strong support system and medical team. She focuses on controlling what she can, finding silver linings, and encouraging others to seek support.

Thank you to Karyopharm for its support of our patient education program! The Patient Story retains full editorial control over all content.

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

Name: Lexie W.
Diagnosis:
- High-Grade Endometrial Stromal Sarcoma
Symptoms:
- Prolonged period
- Severe cramps
- Difficulty breathing
Treatment:
- Surgery
- Chemotherapy
- Proton beam therapy

Table of Contents

Introduction
Initial Cancer Diagnosis
First Relapse
Second Relapse
Cancer Spread
- Treatment
Having a Strong Support System
Living Life
Importance of Self-Advocacy
Words of Advice

I had a period that lasted over a month. I kept thinking that it was normal and that it was going to stop.

Introduction

I live in Scottsdale, Arizona, but I grew up in a small town in Minnesota.

I love going to different coffee shops and checking out the vibe and the coffee. I love hiking and being out in nature during the day. I did a lot of camping growing up. That was usually our vacation.

I love to travel and go to different places. It’s fun to see different cultures. I love to spend time with friends and family.

I have been diagnosed with cancer three times. What I have now is high-grade endometrial stromal sarcoma. It was low-grade at first, then it became high-grade.

Initial Cancer Diagnosis

One time, I experienced intense cramps but I knew they weren’t period cramps. I know my body very well and I knew that something was off, so I went to the emergency room. They gave me Midol and sent me home.

Another time, I had a period that lasted over a month. I kept thinking that it was normal and that it was going to stop, but my sister told me I needed to get checked so she scheduled an appointment for me.

I was eventually diagnosed with low-grade endometrial cancer, but I didn’t do chemotherapy or radiation. I felt I got off a little easier, having to undergo surgeries and then continue living my life.

A doctor came in and said, ‘You’ve got a huge mass the size of a softball that’s pushing up on stuff.’ I asked, ‘When are we going to find out if it’s cancer?’ He said, ‘It is.’

First Relapse

Symptoms

I experienced very similar symptoms and I was still being so ignorant of it. I didn’t think of cancer, which was crazy to me, but that’s how I live my life. I don’t try to allow those thoughts to come in too often.

At the time, my husband was traveling for work. I was walking with a friend and I was a little bit hunched over because I was having a lot of intense cramp-like feelings. I kept telling her I thought it was my appendix, thinking it was appendicitis.

I went to the ER and that was pretty tough because I was by myself. After they ran all the tests, a doctor came in and said, “You’ve got a huge mass the size of a softball that’s pushing up on stuff.” I asked, “When are we going to find out if it’s cancer?” He said, “It is. We can tell,” so that was tough.

Reaction to the Relapse

I was overwhelmed, but I never felt like my life was over. I thought it was another fight I was going to have to fight. It was more about putting my game face on. It was another obstacle in front of me that I had to conquer.

It was tough to make the phone call to my husband. I told him I was going to the ER and he knew the entire time what it could be. When I called, I could barely get words out. He said, “I’m on my way.” It’s so good to have such a good support system, so that was tough, but we got through it.

They all came to the same conclusion. Chemotherapy was necessary knowing that I already had cancer once before.

Treatment

I ended up going through surgery to get the mass out and then I had to decide whether I was going to do chemotherapy or not to make sure that we got rid of all cancer cells.

Make sure that you get a second opinion so that you’re as informed as possible before making a treatment decision. I ended up getting the opinion of a few different doctors. I gave them all of my test results and they all came to the same conclusion. Chemotherapy was necessary knowing that I already had cancer once before and it came back and is now high-grade.

Side Effects of Chemotherapy

Chemotherapy was intense. I also got pneumonia during treatment. There was one point when I was lying on the floor and, in that moment, I felt like my life was over because I was so done that I could not fight anymore.

Chemotherapy was brutal on me. The fatigue was pretty intense. The brain fog was pretty bad too. I had hair loss, but it never mattered to me, which is crazy because I was so superficial growing up.

Since the first time I got cancer, one of the silver linings is my priorities changed. It wasn’t about making sure my hair or makeup was perfect. I couldn’t care less. There was hair loss, but I never cared about wearing a wig. The only time I wear a head cover is to protect myself from the sun, but otherwise, it’s part of my journey, so I go with it.

I was exhausted. I’ve already done this twice. I didn’t want to do this again, but I wasn’t ready to give up.

Second Relapse

Symptoms

I’ve gone through cancer twice and I thought a cold was going to knock me out because, at the time, I couldn’t breathe very well and I was fatigued. I thought it was COVID.

I went to the ER because I also couldn’t breathe. They ran a test and said I didn’t have COVID. They ran a few tests to make sure and did a scan. The doctor came in and said, “You have a big mass in your chest that is pushing up on all of the important tubes that help you breathe.”

Treatment Decision-Making

I thought that they could remove the mass and then we were good, but the mass was next to some important organs. At that moment, I was exhausted. I’ve already done this twice. I didn’t want to do this again, but I wasn’t ready to give up.

After my first relapse and going through chemotherapy, I told my family that if it happened again, we’d be waving the white flag. I couldn’t go through the treatments again. It was too much. That was a hard pill for my family to swallow because it could cut my life short.

But when I was put in the actual situation, I decided I wasn’t done yet. I still had too much to do in my life. It was difficult because I had to think through. Was this something I wanted to do? Did I want to go through the different treatment options? Is this going to affect my quality of life? That’s how I choose to make my decisions these days.

When I looked at my PET scans, it looked like everything was gone. The only thing that was showing was a little bit of red near the scar tissue.

We ended up not doing surgery. We did proton beam radiation, which is different from the traditional one. I was so grateful to be able to go to a facility that had that available because that’s not very common everywhere. It has fewer short-term and long-term side effects.

After radiation, I did three cycles of chemotherapy. The radiation seemed to work, so that was great news.

When I looked at my PET scans, it looked like everything was gone. The only thing that was showing was a little bit of red near the scar tissue. According to my radiologist and doctor, they were pretty sure it was scarring, so I should be good to go and continue to live my life. We could do a couple more rounds, but ultimately, it was my decision. I weighed the pros and cons, and I felt good that it was gone.

Cancer Spread

I was able to live my life normally for a couple of months, so it was a nice little reprieve from a mental health standpoint. I needed it because I was tired of fighting.

I did my follow-up PET scan a couple of months later, which showed it had spread. It’s in the lining of my lungs. I don’t say I regretted my decision, but it was the decision I made.

Treatment

I had to do a lung surgery. I’ve been doing chemotherapy. I’m cautiously optimistic. I hope that the PET scan will show that it worked because I had to make another hard decision of what type of treatment plan I wanted to go with for this next round.

I had three different options. I took some time to think. I was tired of it. I wanted to move on with my life. I went with the most aggressive options, which also had the highest risk. If the PET scan doesn’t show what I hope and believe it will show, then I don’t have a whole lot of options.

I have a decent amount of anxiety, but I’ve been raised to focus on what I can control and then let the rest go.

Having a Strong Support System

With the medical team that I have, it’s a collaboration. They keep me informed and give me all the options. If they believe an option to be better than the others, they’re going to voice their expert opinion. One thing that I like about where I go now is they have a tumor board. As we talk about self-advocacy and getting second opinions, they’ve already integrated those into their model, which is so reassuring.

If they come across unique cases that they’re not as exposed to, they bring the case to the tumor board, so they can weigh in. They bring the information back to the patient to help the patient make an informed decision.

Because of that collaboration, I don’t feel like I’m on an island. All of my family members rally together during these times. They try to get as much information as they can and filter what’s valuable to help me make an informed decision. It’s a lot of weight to be the sole decider, but I guess that’s part of life. We have to make decisions all the time. How do you do that successfully? It’s a team effort.

Living Life

I’m like a duck where I’m calm on top of the water and swimming for my life underneath. I have a decent amount of anxiety, but I’ve been raised to focus on what I can control and then let the rest go.

There’s a lot in my life that I cannot control and this is one of those things. I remind myself that I’m doing everything that I can and I have to be okay with it. Then let the rest be what it is.

I didn’t understand that I could advocate for myself. You know what’s best for you, so it’s important to push for what you know is right.

Importance of Self-Advocacy

Self-advocacy is so important to be able to make an informed decision. You can’t do that without getting all of the information and advocating for what you feel is right. The reason why I think it’s so important to push for what you feel is right is because of my situation. They kept telling me that it was just period cramps when I knew it wasn’t, but they’re the experts and so I felt a little bit defeated and didn’t necessarily know what direction to take.

I needed my sister to advocate for me because I didn’t know what self-advocacy was. It was my first time going through cancer, so I didn’t understand that I could advocate for myself. You know what’s best for you, so it’s important to push for what you know is right.

Words of Advice

Live positively because the opposite sounds so miserable. Of course, we all have our moments. I’m not saying I’m positive 24/7; that’s unrealistic. I have days when I feel down. You need to have more up days than down days. I choose to be positive.

Go big or go home because life is too short. Take full advantage of your situation and find the silver lining.

You’re not alone. I don’t want people to ever feel like they’re alone. There are communities and resources out there to help you.

Life is too short. Take full advantage of your situation and find the silver lining.

Special thanks again to Karyopharm for its support of our independent patient education content. The Patient Story retains full editorial control.

Thank you for sharing your story, Lexie!

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Margie Wilson’s Endometrial Cancer Story

Lexie’s High-Grade Endometrial Stromal Sarcoma Story

Gigi’s Stage 1A, High-Grade Serous HER2+, PR+, ER- Endometrial Cancer Story

Ellen’s Stage 3C, Grade 3 Endometrial Cancer Story

Tags chemotherapy, endometrial cancer

Avastin (bevacizumab) CAPOX (capecitabine, oxaliplatin) Chemotherapy Colectomy Colorectal CRC Immunotherapy Keytruda (pembrolizumab) Patient Stories Surgery Treatments

Nick’s Stage 4A Colorectal Cancer Story

Post author By Katrina Villareal
Post date August 8, 2024
No Comments on Nick’s Stage 4A Colorectal Cancer Story

August 12, 2024

Nick’s Stage 4A Colorectal Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Nick’s symptoms began a year or two before his diagnosis, including changes in bowel habits, size, and consistency, blood in the stool, and abdominal pain, which he initially attributed to aging or irritable bowel syndrome. After experiencing fatigue and escalating pain, he went to the ER where he was diagnosed with diverticulitis and sepsis. Despite initial treatment, he required a laparoscopic washout due to a perforated colon and subsequent complications, including an abscess.

During a follow-up colonoscopy, doctors found a mass, which was later confirmed as adenocarcinoma. He underwent a sigmoid resection, removing part of his colon. While clear margins were achieved, 19 of 49 lymph nodes tested positive for cancer.

Nick began CAPOX chemotherapy, experiencing severe side effects like fatigue, neuropathy, and an acne rash due to the addition of Avastin (bevacizumab). When they noticed an elevation in his tumor marker and growth in his lymph nodes, he was switched to Keytruda (pembrolizumab), an immunotherapy, to reduce the cancer to a manageable level.

Nick emphasizes the importance of mental health support to manage anxiety. He advises listening to your body, advocating for yourself, and using support systems. He encourages seeking thorough medical evaluation for unexplained symptoms and finding strength in support groups, hobbies, and loved ones, stressing perseverance and finding reasons to keep fighting.

Name: Nick S.
Diagnosis:
- Colorectal Cancer
Staging:
- Stage 4A
Initial Symptoms:
- Change in bowel habits, size & consistency
- Blood in stool
- Abdominal pain
- Fatigue
Treatment:
- Surgery: sigmoid colectomy
- Chemotherapy: CAPOX (capecitabine & oxaliplatin),
- Immunotherapy: bevacizumab, pembrolizumab

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

Table of Contents

Introduction
Pre-diagnosis
Diagnosis
- Getting the Biopsy Results
Treatment
Working While in Treatment
Switching to Immunotherapy
Treatment Plan
Managing Scanxiety
Words of Advice

My symptoms started a year or two before diagnosis. It started with a change in bowel habits, size, consistency, some blood in the stool, and abdominal pain.

Introduction

I’m a stage 4A colorectal cancer fighter. My wife and I live in Chippewa Falls, Wisconsin. We have a wonderful 28-year-old daughter.

I’m a full-time firefighter and critical care paramedic. I’ve been doing firefighting for about 16 years and paramedicine for about 13 of those 16 years.

Pre-diagnosis

Initial Symptoms

My symptoms started a year or two before diagnosis with stage 4A colorectal cancer. It started with a change in bowel habits, size, consistency, some blood in the stool, and abdominal pain. I had some acid reflux type of reactions that my wife and I chalked up to aging and not being as healthy as I could be. My wife has irritable bowel syndrome and I thought some of it was IBS because some foods would trigger some reactions in me.

I was working full-time for the department for about a decade and a couple of years later, I decided to change over to a neighboring department. For these jobs, we have to pass a physical agility test.

I have been working by myself daily. I was in pretty good shape. The test is a pretty rigorous test to be able to do what we do. I was 48. I was doing this at an older age than the 20-year-olds they were usually hiring.

I was diagnosed with diverticulitis and sepsis, so they started me on antibiotics right away.

A couple of months later, we responded to a house fire. At some point, my battalion chief pulled me off the line and said, “You look wiped out. I’m going to sit you out for a little bit to catch your breath.” I felt a little tired, but, again, I was getting a little older.

I sat out and went back in for another round. This time, the chief was on the scene and said, “Nick, take your gear off. You don’t look good. Go back to the ambulance. You’re going to be doing rehab, making sure everyone else is doing okay, but we don’t want you going back in.” I thought something was weird.

I called my wife to meet me in the ER. I didn’t know what was going on. I’ve got bad abdominal pain. I haven’t slept. I’m going to go get checked out.

Diverticulitis & Sepsis

I was diagnosed with diverticulitis and sepsis, so they started me on antibiotics right away. They weren’t sure if surgery was going to be necessary, but they transferred me to another hospital. At that point, I was stable.

When I got transferred, I met with a thoracic surgeon and started to realize that things were serious. He said, “We’re not going to go in right away. We’re going to keep an eye on you tonight. Hopefully, things will subside with some more antibiotics and some steroids, if we have to. But we’re going to keep an eye on you and evaluate you. We’d like to avoid surgery.”

The next day, when they were getting my vitals, the nurses said, “We see you’re slated for surgery.” That turned into a laparoscopic washout. They found that I had a perforated colon in the sigmoid area, the area right before the rectum, but that had healed itself.

All of a sudden, I heard the doctors say, ‘That’s not good.’ I remember seeing a black mass on the screen.

They went in through a couple of small incisions, washed everything out to make sure there was no fecal matter, and stitched me back up. I had a couple of surgical drains. I was in the hospital for five or six days and then I was sent home to heal.

I ended up getting readmitted a couple of days later because I had some drainage coming from my drain sites. After a CT scan, they found I had an abscess. I believe E coli was one of the culprits. There was something else too, so they needed heavy-hitter antibiotics.

After another two weeks of antibiotics, the PICC line was removed. I met with the surgeon and everything was looking great. He said, “Let’s do a follow-up colonoscopy to check how the diverticulitis is.”

Colonoscopy

I wanted to sleep through it. I was joking with them and we were all relaxed when all of a sudden, I heard the doctors say, “That’s not good.” I remember seeing a black mass on the screen. He tried advancing past it and I said, “Ow,” but I didn’t feel it. I said “ow” instinctively. He said, “We can’t get past this mass. We’re going to pull out.” The tone changed. You could have heard a needle drop in that procedure room.

They wheeled me back into the recovery room where my wife was waiting. On the way there, one of the nurses handed me a polished stone that had the word “hope” stamped on it. I didn’t think that choked me up, but I carry it wherever I go. In hindsight, it meant a lot and drove home the seriousness of the situation. We didn’t know exactly what was going on, but something wasn’t right. I have enough medical training and field experience to read the room and know it wasn’t good.

The doctor eventually came back in and said they couldn’t diagnose it yet. They took a small sample to send off for testing to confirm what they thought it was. He wouldn’t say whether it was cancer or not.

The good news was they got the tumor with clear margins. They felt it hadn’t spread far…

Diagnosis

Getting the Biopsy Results

I was waiting for the results at home. When I finally got the notification on my phone, I checked it and it said adenocarcinoma. Now we know what we’re dealing with. It’s cancer of some sort. I never thought about it as a possibility.

Treatment

Sigmoid Colectomy

During the colonoscopy, he said we were going to have surgery because what it was had to come out. He referred me to surgery right away. Luckily, it was the same surgeon who performed my earlier surgery who I trusted with my life.

I met with him about a week later. They were going to do an exploratory surgery until they knew exactly what it was in there and then do their thing.

I remember being in the room when my mother-in-law came out too. My wife was there, of course. They wheeled me in, put in the IVs, and told me to start counting back from 100. I don’t think I hit 95. Hours later, I woke up in my hospital room with a slightly sore throat. They performed a sigmoid resection. I can’t remember how much of my colon they took out, but I didn’t require an ostomy, thankfully. They were able to resect it and reconnect it right away.

The good news was they got the tumor with clear margins. They felt it hadn’t spread far, at least in the tissue of the colon. But the surgeon sampled some lymph nodes right next to the tumor site. They took out 49 and 19 of them tested positive for cancer.

I stayed positive. The whole reason I’m in this fight is my family.

CAPOX Chemotherapy

At that point, I was referred to oncology. I met with my oncologist. His nurse was a former ER nurse who I was familiar with and seeing a familiar face went a long long way.

He explained what he planned on doing based on the CT scans. They saw some inflammation in other lymph nodes and they weren’t sure if that was post-surgical. They wanted to do another CT scan to check, but they were happy about the margins being clear. I was staged at 3C then. It metastasized a little bit past the point of origin but not very far.

The first day of chemo was going to include labs and a CT scan to see where we were at. The plan was to do CAPOX: capecitabine, an oral medication, and oxaliplatin, an IV medication. I would do the oral chemo for two weeks and then on the third week, I would go in for the IV chemo. They would do labs on those days to make sure everything was okay.

Unfortunately, the doctor didn’t like what he saw on the CT. He wanted to get a little more defined imaging, so he set me up for a PET scan and delayed the chemo. A couple of days later, we came back to start chemo again and get the PET scan read.

The doctor confirmed that it had spread to the lymph nodes in the abdominal area, along my aorta, and up to my left shoulder. It had spread a lot further than we thought it had.

I felt like every time we made a plan to move forward, we were getting kicked back a couple of steps, but I stayed positive. The whole reason I’m in this fight is my family. I believe that someday, this cancer will get me, but I’m not going down without a fight. I’m stubborn, so it’s going to be a long fight. I won’t go down without swinging.

I have a four-day weekend so I tried to time my infusion, so I had a couple of days to recover post-infusion and feel somewhat human before returning to work.

Side Effects of CAPOX Chemotherapy

Chemo wasn’t fun. It knocks you out. I felt fatigued on the first day. For probably a week and a half, when you start getting the infusion, you can’t drink cold drinks. It felt like swallowing glass shards. A lot of fatigue and neuropathy kicked in.

I didn’t like being out in the cold and I love ice fishing. You’ll catch me outside at -20°F on a normal day, but with chemo, not a chance. I had to be bundled all the time.

My eyes were always drying out, so they hurt a lot. I had insomnia, joint pain, and muscle pain.

They added Avastin (bevacizumab), which is an immunotherapy, to my chemo routine. That caused a bad acne rash on my back from the waistline up to my neck. The doctor had never seen nor heard of it, but we can only attribute it to Avastin.

Working While in Treatment

I was able to go back to work full-time as a firefighter. I have a four-day weekend so I tried to time my infusion, so I had a couple of days to recover post-infusion and feel somewhat human before returning to work.

My work was very accommodating. We’re firefighters, so we don’t sleep all day, but the chief said if I needed to rest, I could go to the dorm, which I appreciate. I never took him up on it. I tried to stay with my brothers and sisters training or doing calls, and that worked great.

I was going to be on treatment for the rest of my life. I might get some time off if we get no evidence of disease at any point, but it will come back at some point and I’ll have to go back on treatment.

Switching to Immunotherapy

The initial plan was for six months or eight cycles of chemo and Avastin. Unfortunately, because of the restaging, I was going to be on treatment for the rest of my life. I might get some time off if we get no evidence of disease at any point, but it will come back at some point and I’ll have to go back on treatment.

My tumor marker was through the roof when this all started and it was dropping with chemo. We were seeing shrinkage in the lymph nodes. Chemo sucks, but it’s doing what it’s doing, so we stayed very positive.

When we got to cycle six, we noticed my CEA was going up a little bit. We were doing CT scans every three months and we noticed some growth in the lymph nodes. The doctor said, “We’re going to stop the chemo. It’s not working. You can only receive so much oxaliplatin before it becomes completely ineffective. This saves us a couple of cycles where if we need to go back to it, we can go back to it. We’re going to switch over to an immunotherapy called Keytruda (pembrolizumab).”

The side effects of immunotherapy are supposed to be much less than chemo and I’m all for that. I switched from chemotherapy to immunotherapy in August 2023. I still have very slight neuropathy every now and then in my toes and my fingertips. Nothing debilitating but a reminder that I was on chemo at one point and that probably won’t get any better or any worse, hopefully.

Keytruda is a half-hour infusion. Side effects are minimal. Between cycles two and three, while we were camping, I noticed that my resting heart rate was higher than it should be. I was not exercising as much and a little out of shape, but I shouldn’t have a resting heart rate of 130-140 beats a minute. I was sweating a lot without doing anything, so I couldn’t figure it out. I talked to the oncologist and they ran some thyroid tests.

One of the known side effects of Keytruda is thyroid burn. It’ll cause hyperthyroidism until the thyroid burns out and then it’ll cause hypothyroidism.

The support of my family, my work family, and my friends is what gets me through this.

Treatment Plan

We want to do Keytruda for 18 more months. It’s a two-year plan. We’ll see what it does and go from there. Hopefully, the response brings everything down to normal levels, I won’t have evidence of disease, and I can ride that out for a while.

Fingers crossed, maybe Keytruda is the cure for colon cancer, but realistically, I don’t think so. I think it’ll be a lifetime battle, but it’s going to be a long life. The support of my family, my work family, and my friends is what gets me through this.

Managing Scanxiety

As a paramedic, I’ve dealt with patients with panic attacks and anxiety. Anxiety’s a real thing. A lot of times, it doesn’t seem like it with the patients you’re dealing with, but now that I’m put in that position, it’s a real thing. I’ve dealt with it even before cancer through another set of unfortunate circumstances and luckily, I have a great support group in place.

We see a lot of things as paramedics and firefighters, so after a while, you realize things aren’t normal. I had to start paying closer attention to my mental health. I started seeing a therapist and she’s great. She taught me how to deal with stress, anxiety, and my feelings.

What we go through as cancer patients is not something most people go through nor is it something they understand.

Stay strong and recognize that the stress is real. What we go through as cancer patients is not something most people go through nor is it something they understand. Take a deep breath. Listen to what your mind and body are telling you.

Your feelings are valid. Don’t try to brush it off and try to be strong by pushing your way through it. Rely on your support team. If you have a therapist, talk to that therapist.

Most oncology teams come with a social worker. Use that resource. Rely on your family for strength. Tell your spouse what you’re feeling even when you don’t want to. Sometimes talking about it gets it out there and puts it away, as opposed to it weighing you down.

What helps me is retreating home, spending time with family, or staying busy with work. Rely on your hobbies if you have any. If you don’t, find some. I’m a big fisherman. I love fishing. You could put me on a lake and even if I couldn’t catch a fish for days, I would be in my happy place. Find something that helps you disconnect from the cancer and what you’re going through.

Words of Advice

For anyone who might be experiencing symptoms that you’re not quite sure of, listen to your body. Talk to your doctor. Advocate for yourself. If you feel something’s not right, push for tests to try and figure out what’s going on. The answer, “We don’t know what’s wrong with you,” is not acceptable. Push to find answers.

For cancer warriors who are going through this, keep going. You’re not alone. There’s support beyond your family, friends, and coworkers. There are a ton of support groups online. There are social workers available. There are platforms like The Patient Story.

(For more support options, please visit one of our many partners such as Colontown or the Colon Cancer Coalition.

You’re not in this alone. Some days, it may feel like it. Some days, I get down in the dumps, but I find something to get me back up. I find a reason to keep going. There are a million reasons to keep going and even if you find just one, that’s all it takes.

Listen to your body. Talk to your doctor. Advocate for yourself.

Thank you for sharing your story, Nick!

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Amy’s Stage 4 Colon Cancer Story

Post author By Katrina Villareal
Post date July 19, 2024
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August 7, 2024

Amy’s Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Amy initially noticed a slight change in her stool consistency, which persisted despite normal test results. After a year-long delay due to the COVID-19 pandemic, a colonoscopy revealed a 6-cm mass in her colon. Although the initial biopsy showed no cancer, surgery confirmed cancer in the tumor center and 11 out of 21 lymph nodes. It was stage 4 colon cancer.

She began treatment with FOLFOX, experiencing severe side effects like jaw pain, cold sensitivity, and neuropathy. Despite completing the regimen, a slight increase in CEA levels prompted further tests. A CT scan and MRI revealed cancer in her liver, leading to a relapse diagnosis. Unhappy with her initial oncologist’s pessimism, she sought a second opinion and switched to a more supportive doctor.

Her new oncologist initiated FOLFOXIRI, which shrank the tumors but wasn’t enough to eradicate the cancer, leading to surgery and an ablation. When the cancer resurfaced, she joined an immunotherapy clinical trial. The difference between chemotherapy and immunotherapy was substantial, providing her with a significantly improved quality of life.

Throughout her stage 4 colon cancer journey, Amy emphasized the importance of a supportive medical team, listening to her body, advocating for her health, and maintaining movement and proper nutrition during treatment. She also stressed the need for open communication with healthcare providers about side effects and health concerns.

Name: Amy L.
Diagnosis:
- Colon Cancer
Staging:
- 4
Initial Symptoms:
- Slight change in stool consistency
Treatment:
- Chemotherapy: FOLFOX, FOLFOXIRI
- Clinical trial: immunotherapy

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

What might be normal for somebody else might not be for you. If there’s a change, it’s important to talk to your doctor about it.

Introduction

I’m from the Seattle Pacific Northwest area and I was diagnosed with stage 4 colon cancer.

Pre-diagnosis

Initial Symptoms

I only had one symptom, which was a very small change in my stool. It became slightly looser, but it wasn’t consistent. For most people, that might not be a big deal, but I hadn’t changed my diet. The first time I noticed it was when I had just come back from Spain and I thought it was from traveling. I gave it a few weeks, but it wasn’t getting better.

PCP Appointment

I listened to my body and talked to my doctor about it within a month of this first symptom. My doctor at the time thought it was food sensitivity. They did autoimmune testing for Crohn’s and celiac disease, but those came up negative. They did an allergy panel to see if I developed any new food allergies. That came back normal. I also had my first CEA test, but I had no idea what that was and that also came back normal.

I was blessed to have a doctor who was very proactive and didn’t ignore my symptoms. They knew that I knew my body. What might be normal for somebody else might not be for you. If there’s a change, it’s important to talk to your doctor about it.

Unfortunately, they couldn’t get me in for a colonoscopy. They did the fecal immunochemical test (FIT) test. They did all these tests and everything was coming back normal.

He recommended me to a dietician who started looking at what I was eating and what we could change that might explain the stool change. My doctor said that since everything’s coming back normal, he wanted to do due diligence to make sure that there’s nothing they might be missing. He said, “Let’s get you in for a colonoscopy.” That was in the end of 2019.

They called in and said my procedure was non-essential and not COVID-related, so I needed to be put on hold… Unfortunately, I ended up waiting for a whole year.

Getting a Colonoscopy

They were booked back a few months. I wasn’t considered urgent. Nobody thought I had cancer. I was 39. They said they’ll get to me at the end of January or early February 2020. Then the COVID pandemic happened.

A week before my appointment, they called in and said my procedure was non-essential and not COVID-related, so I needed to be put on hold. They would call when they could make it happen again. Unfortunately, I ended up waiting for a whole year.

During that year, I was furloughed, so I was staying at home. My symptoms went away, which confirmed to me that maybe it was something I was eating since I wasn’t eating out.

By January 2021, I got a phone call asking if I wanted to schedule my colonoscopy again. I almost said no and that I didn’t need it anymore because the problem had gone away, but a little voice inside me told me to go ahead and do it. The “worst” thing that they could tell me is that nothing’s going on. I had nothing to lose, so I told them to go ahead and schedule it. They scheduled me for the first week of February 2021.

I didn’t have any other symptoms, like pencil-thin stools, bloating, or pain. Nobody was looking for cancer, especially colon cancer. Most people who get colon cancer are in their 70s and 80s. The first oncologist I had even told me that I was the youngest patient he ever had. Most of his patients were 60 and older, so it wasn’t on anyone’s mind that I could have cancer.

When I did the prep for my first colonoscopy, it was worse than the colonoscopy itself, but it’s a small drop in the bucket out of all the days in my life. On the day I came in, everything proceeded as normal. I got onto the table and they told my husband that the procedure could take up to 30 to 45 minutes. He couldn’t stay with me, so he dropped me off and left.

They put me in twilight sedation so I’m out of it, but the doctor’s voice and tone cut through. She turned to her nurses and said, “Where is her husband? Get him back here right now. Call him. We need him back here right now.”

She didn’t say anything, but because of her tone, I knew something was wrong. I felt my heart dropped to my stomach. I was half awake and the anesthesiologist was trying to put me back to sleep because my eyes were open and I was starting to ask questions. I didn’t feel anything, so it wasn’t traumatic.

The biopsy results showed there was cancer in the center of the tumor and 11 of 21 lymph nodes.

Diagnosis

Biopsy

When they wheeled me back into a curtained area, my husband was already there waiting for me. The doctor came and said they found a 6-cm mass in my colon.

I waited for the biopsy results to come back and when she finally called, she said they biopsied the tumor, but there was no cancer. However, they were extremely concerned given the size. It was either going to turn into cancer soon or there would be cancer in the center and not on the outside, so they wanted to get me in quickly. Everything was indicating that they had “caught this in time” and that I would just need surgery and might not even need chemo.

Surgery

They scheduled the surgery within three weeks of that conversation. They were on top of it and wanted to get it out.

The surgeon came in to talk to me. The biopsy results showed there was cancer in the center of the tumor and 11 of 21 lymph nodes. The tumor hadn’t broken through the colon, like they usually see with more advanced cancer, so they were not expecting to see cancer in my lymph nodes. He was very shocked it was stage 4 colon cancer.

I made an appointment with a doctor at Fred Hutchinson Cancer Center to get a second opinion because I wanted to know more.

Oncologist Appointment

My mom was an ER nurse. She also has leukemia, so she hasn’t worked while dealing with that. My mother-in-law is a hematology-oncology nurse at the Mayo Clinic. I’m fortunate to have knowledgeable people who helped me through the next process.

They referred me to my regular oncologist and said he’d go through my stage 4 colon cancer treatment plan. I had a meeting with him and it went okay, but I ended up switching. He told me that I would need clean-up chemo or adjuvant chemotherapy. Everything looked fine. He wasn’t hugely concerned.

Treatment

FOLFOX Chemotherapy

They said I was going to do FOLFOX (folinic acid, fluorouracil, and oxaliplatin) and then we would do a CT scan. They did a CT scan right after the colonoscopy where they found the mass, but they didn’t find anything else. He said it’ll be good.

Getting a Second Opinion

I made an appointment with a doctor at Fred Hutchinson Cancer Center to get a second opinion because I wanted to know more. I knew nothing. Is FOLFOX the standard treatment? What were my treatment options for stage 4 colon cancer?

Different doctors have different preferences and I wanted to ensure I was getting all the information. I made an appointment and brought all of my medical records to make sure. The doctor said they would do the same treatment.

I had a very rare side effect where I had jaw pain… This was a rare side effect of oxaliplatin.

Side Effects of FOLFOX

I did 12 and it was terrible. Before my second round, I had a very rare side effect where I had jaw pain. It was the most excruciating pain I’d ever experienced in my entire life. It radiated from my jaw back up around my neck and felt like somebody had put my head into a vice.

They didn’t know what was going on. I didn’t find out until I switched oncologists that this was a rare side effect of oxaliplatin. They sent me to a jaw specialist to make sure there wasn’t something else going on. I spent the rest of my treatment switching back and forth between morphine and oxycodone because the pain was so horrific.

On top of the nausea and hair loss, the cold sensitivity was bad. I like my drinks either really hot or cold. I don’t like lukewarm drinks. Chemo, especially oxaliplatin, made everything taste like pennies and dirt. I’m a big water drinker and I couldn’t drink water because the taste would make me gag. I started drinking electrolyte drinks to mask the taste. I don’t like sugary drinks, but I needed to get fluids in me so I don’t end up in the hospital. You have to do what you have to do to survive, I guess.

I also developed bad neuropathy in my hands and feet, and that came on suddenly. I was doing fine, but by cycle 10, the pain in my feet started to get bad. I was having trouble gripping things. I couldn’t wash the dishes. I would pick something up and drop it.

When the CT scan results came back, they found something in my liver… they didn’t think the cancer had come back, even though my CEA was up to 5 or 5.5.

Post-Treatment Follow-Up

After they finished, they did my scan and didn’t notice anything, so they sent me on my way and said they’d see me in six months. I wanted to see him in three, but he said he didn’t think that was necessary. I said I did, so he scheduled me for a three-month visit, which ended up being fine.

During my six-month visit, my CEA went up to 2 and that was my first flag. My CEA was still perfectly normal, but my CEA had never gone above 1.7. When I had the appointment with my oncologist, I told him this was concerning for me and he said it was a little concerning for him too. It’s a little bit of an increase, but it could still be normal, so he scheduled a blood draw after four weeks.

In four weeks, my CEA was 4.6 and that was abnormal for me. It was still within the normal range because anything under 5 is still normal, but I thought it was concerning. He said we could do another blood draw in four weeks.

By this time, it was around July and he said I wasn’t due for my CT until October. I said I didn’t want to wait until then.

Relapse

When the CT scan results came back, they found something in my liver. They thought it was a lesion because they said cancer usually looks like billiard balls but this looked like a zucchini. At that point, they didn’t think the cancer had come back, even though my CEA was up to 5 or 5.5, so something was going on.

They did an MRI and the results looked more like cancer. When they did a PET scan, the results looked even more like cancer. The biopsy confirmed it.

He said, “It’s looking more like it could be cancer.” They hadn’t done the biopsy yet at this point. He said, “If it’s cancer, there’s only a 20% chance you’ll make it to old age. That’s what the statistics tell us.”

I needed a doctor who I felt was on my side. I needed someone who I felt was going to fight for me.

Reaction to the Relapse

I walked out, got in my car, closed the door, and broke down crying. I was done with this oncologist. This is a horrific journey in itself. I needed a doctor who I felt was on my side. I needed someone who I felt was going to fight for me. I don’t care what the statistics say. There’s always somebody that’s on one side or the other.

Looking at Statistics

When you get these statistics, they mean something to doctors and researchers, but they don’t mean anything to people personally because you don’t know which side of that line you’re going to fall on. You could have the worst diagnosis and still survive.

I didn’t want to hear the statistics not because I was blind to it but because I knew it didn’t matter to me. The doctors are guessing which side of the line I’m going to end up on and I don’t want to hear their guess. I wanted to know if my treatment was working and if not, what my next steps would be.

She noticed the lymphatic system near my kidneys was getting larger so they thought that there was cancer there.

Switching Oncologists

I went back to the oncologist from whom I got a second opinion and she’s fantastic. She’s the best decision I ever made. One of the first things she did was get all of my scan results. She called my former doctor, requested all of my scan results, and sent them to a couple of different specialists so they could look at all of them. My new oncologist is on top of it and doing CT scans every eight weeks.

She noticed the lymphatic system near my kidneys was getting larger so they thought that there was cancer there. My first oncologist hadn’t even looked at that and it was one of the first things she noticed. It confirmed to me that I made a good decision.

I have this bad luck of getting things that look favorable but don’t end up being favorable. When I had my relapse, they looked at it and said I had a single liver lesion, which isn’t common. At that point, I was still considered curable.

Relapse Treatment

FOLFOXIRI Chemotherapy

She put me on FOLFOXIRI (folinic acid, fluorouracil, oxaliplatin, and irinotecan). I did FOLFOX a few times, but it wasn’t shrinking, so they added irinotecan and it started to shrink.

I went back on the full treatment for six months with very low node shrinkage but with slow growth.

Side Effects of FOLFOXIRI

I was miserable on oxaliplatin. It was terrible. I was sick all the time. The neuropathy in my hands had gotten better, but my feet had gotten worse. I could still do stuff with my hands, but my feet are pretty bad. I also had cold sensitivity, like not being able to eat cold food. Breathing in cold air was like breathing in shards of glass. My oncologist said they didn’t see any shrinkage with oxaliplatin, so she decided to remove it.

I had treatment until February 2023. It was shrinking and looking good, but it wasn’t going away, so they wanted to do surgery to remove the lymph system that had cancer in it. They did an ablation on one spot.

My oncologist wanted to do the ctDNA test to see if I had circulating tumor DNA in my blood. Four weeks later, that came out positive.

She said they usually wait 8 to 10 weeks before doing the first scan post-treatment, but she wanted to go ahead and do an MRI six weeks after surgery. She wanted to make sure because it looked like there was residual cancer.

Unfortunately, my liver lit up. They did a PET scan and there are a couple of spots now. I went back on the full treatment for six months with very low node shrinkage but with slow growth.

The difference between immunotherapy and chemotherapy is like night and day.

Joining a Clinical Trial

I started with an immunotherapy clinical trial in December 2023. The difference between immunotherapy and chemotherapy is like night and day. I’m not sick and tired all the time, so I’m able to go out and do normal activities. I feel like I’m able to have more of a normal life. It’s been fantastic, but I’m still fighting.

This is why it’s important to have a doctor who’s on your side. As soon as my recurrence happened, she went ahead and signed me up for every single trial that they offered. She didn’t ask me because she knew that these trials could have a year’s wait list. She figured that wherever I was, at least I was on the wait list. If a spot opened up, we could have a conversation about it.

When it comes to treatment, you do have a say. Your doctor may have a recommendation, but you have a say in what your treatment plan is going to be. You can tell them if you want an alternative.

A lot of people are intimidated, so they don’t want to tell their doctor what to do. It’s important to remember that your doctor is working for you. Find someone who’s working for you. My oncologist definitely was working for me.

Future Treatment Plans

My cancer is still growing. At any time, I can say I want to try something different. My oncologist and I have had those conversations. Because I’m on a trial, it’s not going to last forever. Unfortunately, I can’t be on this for the next five years. Having been off chemo, I’m hesitant about going back to it. I wanted to find out if there were non-chemo options we could explore, so we’ve talked about other options that are on the table.

With cancer, a lot of times, people sit and suffer in silence so by the time symptoms start rearing their big ugly heads, it’s often in the advanced stages.

Words of Advice

Know your body and trust your body. If something changes and there’s no warrant for that change, talk to your doctor. Don’t talk to your friends. Don’t go to social media. For everyone else, it might be normal, but if it’s not normal for you, it does warrant a conversation with your doctor. If it turns out to be nothing, you’re not out that much. I don’t think any doctor’s going to be mad that you wasted their time coming to them with your concern. Get rid of that fear. Know your body and know what’s normal for your body.

If anything comes up abnormal, don’t be afraid to go to your doctor and advocate for yourself. Tell them you want to find out what’s going on. With cancer, a lot of times, people sit and suffer in silence so by the time symptoms start rearing their big ugly heads, it’s often in the advanced stages.

People ignore the early symptoms. Maybe they’re busy, maybe they’re afraid, but I think primarily it’s because people think it’s not a big enough issue to warrant seeing a doctor. If it’s not normal for you, speak up and say something. The best thing that could happen is they tell you it’s nothing. The worst thing that could happen is they tell you it’s something, but maybe they found it before it’s something big and problematic.

Thank you for sharing your story, Amy!

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Elizabeth’s Stage 4 Colon Cancer Story

Post author By Chris Sanchez
Post date July 19, 2024
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July 19, 2024

Elizabeth’s Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Elizabeth was diagnosed with stage 4 colon cancer on March 14, 2019, and, after chemotherapy and surgery, was declared NED in July of the same year. On the first of July this year, she celebrated her 5th year of being cancer–free.

Elizabeth has something of a long history of cancer, having lost her mother to non-Hodgkin lymphoma just over 4 months after she was born; having been diagnosed herself with adenocarcinoma of the submandibular salivary gland, which very rarely affects children, at just 2 years old; and having had a basal cell removed from her face at 25. She has also had a long history of stomach issues. Her colon cancer was discovered when her condition worsened to the point that a CT scan became necessary.

Elizabeth has learned a lot from her experience, and is eager to share her story with other patients in the hope that she may be able to offer both guidance and reassurance.

Name: Elizabeth W.
Diagnosis:
- Colon Cancer
Staging:
- Stage 4
Initial Symptoms:
- Irritable bowel syndrome (IBS)
- Small intestinal bacterial overgrowth (SIBO)
- B12 deficiency
- Hypoalbuminemia
Treatments:
- Surgery (removal of left side of liver and small portion on the right)
- Chemotherapy (oxaliplatin and xeloda)

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

Table of Contents

Introduction
- History of Cancer
Pre-diagnosis
Discovery and Diagnosis
Reaction to My Colon Cancer Diagnosis
Treatment
Lessons Elizabeth would like to share

I’m so grateful to be able to share my story with other people who will be able to watch this and know that there is a light at the end of the tunnel, or that there are things that they can do to help themselves.

Introduction

Hi, my name is Elizabeth. I work in the TV industry.

On March 14th of 2019, I was diagnosed with stage 4 colon cancer.

After surgery and chemotherapy, I was declared NED (no evidence of disease) later that same year.

On July 1st, I will have been 5 years cancer-free.

History of Cancer

I have kind of a long history with cancer.

Ten days after I was born, my mom was diagnosed with non-Hodgkin’s lymphoma of the bowel. They gave her 2 years to live, but she made it to just 4 months after her diagnosis. Bone marrow transplants, which is what they do now, had not started yet. They actually started 2 years after she was diagnosed.

When I was 2, my dad noticed that I had a lump in my neck. I’d been born with a cyst under my tongue, so he thought that that’s what it was. It turns out that I had adenocarcinoma of the submandibular salivary gland. I believe I was the first child or one of the first children, at least, to be diagnosed with that type of cancer. It’s way more common in adults.

At 25, I had a basal cell removed from my face. So I joke that I’ve had cancer about 2 and a half times because a basal cell, it’s technically skin cancer.

Pre-diagnosis

So I always sort of had stomach issues. My sister and I, whether it was lactose intolerance or whatever, we’d get stomach aches. And very commonly for us, we would eat something and then we would almost immediately go to the bathroom. It was just something that we always did. And I didn’t really pay that much attention to it because I tested negative for celiac multiple times.

I went to a GI in my early 20s when I moved to L.A., and I tested negative for celiac twice. They gave me an irritable bowel syndrome (IBS) diagnosis, which is just a very blanket diagnosis of any sort of stomach issues.

I then started to get really bad stomach issues, later in my 20s and into my 30s. And at one point I was in Europe, my sister was coming to meet me, and I was in so much pain she had to bring me xiaxin, which is an antibiotic.

I would feel better on the antibiotic for a little bit after, and then the issues would just come back. Nothing seemed to make them go away permanently. As for my sister, she had done a round of vaccine for her stomach issues and they had just gone away.

I went and saw a GI because I was having trouble finishing going to the bathroom. I would go to the bathroom and I would feel like there was more that needed to come out, but I would have to sit and wait for a little bit for it to come out.

So the GI did an exam and he said, everything seems fine, but, I’d like to do a colonoscopy to rule out Crohn’s or colitis. And then he also did a bacterial overgrowth test.

So I got a call from my insurance that said that he was leaving the network the next week, and that I would have to find a different GI to do the colonoscopy. So I got a new referral to another GI. He looked at everything that the previous GI had done. He said, you have IBS with bacterial overgrowth because I tested positive for SIBO.

Then he wanted me to take an antibiotic every night for 6 months to a year. And what he said to me after that was, this is what I think is wrong with you, and I’m never wrong. I didn’t like that answer.

My work in TV keeps me filming about 8 months a year. Every hiatus in the spring, I would go see another doctor. So I got another referral to another GI. I went and met with her in Santa Monica and she said, I don’t think it’s Crohn’s or colitis, but we can rule it out by doing a colonoscopy. But she also said, well, you aren’t having symptoms right now, so let’s just wait until your symptoms come back. And it was my first time as an adult that I went an entire year without any symptoms.

That all changed on March 1, 2019, when I was at work. I will never forget it.

It was a Friday evening. I was standing in front of the house where we were going to film, and I felt like I had pulled a muscle in my side. And I remember saying to one of my friends at work, like, it feels weird because I didn’t do anything that would have caused that feeling. And from that day onwards, I started getting shooting pains from my left side towards my middle, and they would become more frequent and more painful as the weeks went on.

On March 11th, I was at work and I started to just feel ill as well. I took the next day off and went to see another GI. He did all these different tests, and he noticed that my blood work from January, from my physical, revealed that I had very low B12 and very low albumin, and nobody had followed up to do additional testing.

The GI said, you know, we’re just going to run some tests. I would like to do a colonoscopy. You probably have a mild Crohn’s and colitis. So the same thing that everyone else sort of thought was or wasn’t what I had.

Okay, well, I have a month left of work. Is it possible to do it when that’s when that’s done? And he said, oh yeah, of course, no problem. I said, as long as it’s not life threatening. He said, oh no, nothing like that.

The next day, I woke up in the most pain I’d ever been in—I was in so much pain that I could not stand up straight—and I drove 35 miles to Santa Clarita to go to work. But everyone at work was like, you have to go home.

My doctor called me and he said the inflammation levels in my blood were so high. He said, you have to have a colonoscopy on Friday (this was a Wednesday). I was talking to my parents and my dad, who’s a pediatrician, decided he was going to fly down because of how much pain I was in.

My GI initially had told me to start taking fiber on that Tuesday. And then on Wednesday, when he called me, he said, don’t take fiber, switch to Miralax instead. My first bowel movement post-Miralax on that Thursday was covered in blood, and it was the first time I had ever had blood in my stool.

I reached out to him and he said, that’s perfectly normal. It’s what we would expect because of the levels of inflammation in your blood. I wouldn’t worry about it, he said.

Discovery and Diagnosis

However, my GI and my dad had spoken on the phone and they decided they were going to send me for a CT test. So that Thursday, March 14th, I drove to UCLA to have my CT exam. My dad was flying in and was going to meet me at UCLA.

I had the CT exam, and when I was done, my dad showed up. I was still in pain and extremely nauseous. We drove to Rite Aid to buy something, but I was feeling so bad that I couldn’t leave the car; my dad had to run in.

When I got home I immediately ran into the bathroom and started throwing up. But in the middle of all that, my dad walked in with my cellphone on speakerphone because my doctor had called back.

The doctor says, I’m so sorry, but you have a tumor in your colon and spots on your liver and you have to go to the hospital.

And my dad whispered, it’s happening all over again. Because my mom had non-Hodgkin’s lymphoma of the bowel. It wasn’t connected through cancer, but it was in roughly the same location.

And then my doctor called me back, he was able to get me a bed. Just go to UCLA, he said. I packed and we drove over.

We arrived at UCLA and got settled. The next morning, they brought me in for the colonoscopy.

If you have a blockage in your colon, no matter what stage you’re at, if it’s bad enough, they’ll do an emergency surgery and just take out that part of the colon right away. They were successful and were able to place a stent.

The next day I met Dr. Agopian, who ended up being my liver surgeon. He had a refreshingly different approach from the others I had spoken with. He walked into my room by himself, sat down at the screen, and turned it to face me.

Dr. Agopian pulled up my scan and he said, you have three spots on the left side of your liver and one on the right.

Dr. Agopian said, I want to take out the whole left side of your liver and this spot on the right, it’s right on the edge. We’ll just cut it out. And then he looked at me and he said, let’s cure this thing. And he added, well, we’ll do a few rounds of chemo and then if it’s the same or better, you can have surgery.

Reaction to My Colon Cancer Diagnosis

So after I was first told I had colon cancer and spots on my liver, I remember sitting on the floor and there were a few first thoughts.

My friend Stacy was diagnosed with breast cancer when she was pregnant with twins, and she passed away before they turned two. At their first birthday, she had said to me that she had bone spots. I remember calling my dad and asking him what that meant. My dad had said to me that any time cancer leaves its origin, it’s only a matter of time.

So when he said I had liver spots, my first thought was, oh, I’m going to die. And then my dad left to go call my stepmom. I sat on the floor and my first thought was, this is so stupid. I just was like, I can’t. It just didn’t make any sense.

And then on the way to UCLA, I don’t remember if we really said anything. I remember having conversations with myself, and I was just sort of going through all of the things that I’d done. I’ve traveled a lot. I’ve been to all seven continents, like you’ve lived, you’ve had a really good life.

And we get to UCLA and headed to my room. The woman said that they were going to do a biopsy and colonoscopy in the morning, and so they were going to do 3 tap water enemas that night. My dad went to find lodgings for the night and my stepmom was going to fly in the next morning. So I was all alone in the room.

I just remember sitting in that hospital room and basically knowing already that I had stage 4 colon cancer. It’s a very strange thing because no one had confirmed anything yet and I didn’t have a biopsy, but I already knew.

For a period of time, I was explaining what was going on, but the minute that I would have to say I have stage 4 colon cancer, I would just lose it. And so I didn’t tell. A few people, like those from the show that I was working on, showed up in ways that they didn’t have to. They had always been extremely loving and caring towards me.

But Dr. Agopian made a real difference. He was the first person that sat down and explained things in a way that was practical and straightforward. Okay, here’s plan A, here’s plan B, here’s plan C. These are the options. These are the things that we can do. And I felt so disconnected from everything that was going on until this man walked down and just said, this is what’s happening. This is what we’re planning on doing.

He for me was like a light, like a beacon of hope that nobody else presented. And I held on to that so tightly because nobody was giving me anything else.

Treatment

I was in the hospital from Thursday to Sunday. I only stayed in the hospital as long as I did because I kept getting fevers at night. They couldn’t find any infections. They couldn’t figure out what my fever was caused by, either; there wasn’t anything else going on. I basically had to stay until I stopped getting fever.

And then I got better and was released. My parents initially told me to come to Northern California, where they live, because they knew the head of oncology at UCSF and they’re like, you’ll come up and do this at home. But I said, thanks but no, I’m not leaving my house. If I go home to do this, my entire existence revolves around me being sick, away from all of my things and my cat and so on.

So they gave me the names of a few different oncologists and reached out to their friend at UCSF for referrals to UCLA as well. They came back with two of the same three names. And after a couple of initial calls I finally got to talk to an oncologist, and my sister and parents flew down to meet him.

Chemotherapy

I had my first round of chemo on April 2019 and ended in November 2019. I took oxaliplatin and xeloda.

After that, I did a scan. I had been told, if my scans were good, we would cancel the chemo appointment. If they’re bad, then I’d need to stay and do another round of chemo.

And I had asked my doctor because the liver surgeon had said it just has to be the same or better. And I said, how often is it the same or better? He said 75%. I think it was 70 or 75% are the same or better on oxaliplatin and xeloda after three rounds. But I was taken aback when I got a phone call and was told that my appointment had been cancelled, my doctor was taking a leave of absence, and I had to find another doctor while he was gone.

So I paged my nurse practitioner, and I said, well, I want my scan results. And she said, oh, your colon cancer tumor, you can’t even really see it anymore. And all your spots shrank.

I then called the liver surgeon’s office, Dr. Agopian’s office, and was told that he wouldn’t be back until Wednesday. But then I got a phone call back and was told that I was going to have surgery and that I needed to meet Dr. Agopian and my colon surgeon on Friday.

I immediately called my friend who lived in Hawaii, and I scheduled a flight to Hawaii on Saturday, right after the meeting with the doctors, because I wanted to have a bikini vacation before they cut into my stomach.

Surgery

So during the Friday meeting, we scheduled my surgery for July 1st of 2019.

There was an initial concern about the date; my dad went, oh, it’s July 1st. It’s the day in every hospital where everybody moves up a level. A lot of people don’t have surgery on July 1st. But it turns out that none of the doctors assigned to me would be affected, which was great.

I underwent the surgery as planned on July 1, 2019.

Remission

One or two weeks later, I went in for my follow up appointment with Dr. Agopian. He came in and he said, is anyone giving you your pathology yet? I said, no.

And he said, the cancer cells in your tumors, they’re all dead. At that point I’d had 3 rounds of chemo out of the 8 that I was supposed to have, and I just sort of went, oh, okay.

And then a day later, I came in to see my colon cancer surgeon and he walked in and goes, Agopian stole my thunder. And they were like so excited. But again, my oncologist was gone and so I didn’t quite have that conversation.

I went to a new oncologist and he’s going through my file like he hadn’t even looked at it yet. And he was just like, oh, this is good, this is good.

And then he goes, you’re in remission. I called my sister after and I was like, didn’t sink in and it didn’t feel real. And then finally when my oncologist came back and said, you know, they say NED, which is no evidence of disease.

I finished my colon cancer treatment in November of 2019. I dropped the oxaliplatin because I had a allergic reaction on round 6 and broke out into hives. So I just did the xeloda for my last few rounds.

I got scanned every 3 months, and then it went to 4 months. And on July 1st when I go in to see my oncologist, for my 5 year scans, I then get a say in how long we’ll have a discussion of how often we’re going to do the scans versus the Signatera, which is the blood test where they can test for tumor markers in your blood.

… you will not always feel [bad] because in the first round you don’t know when it’s going to end and you feel like it’s never going to end.

Lessons Elizabeth would like to share

Radical Hope

During the course of my treatment, one of her friends had said it was really interesting because she was having conversations with one of her friends who was a doctor, and what the friend had said to her was, there’s no reason not to have radical hope.

So radical hope sort of became my thing.

I’m not religious. I don’t believe in God. But that being said, there is still a sense of whatever happens, happens, and what’s meant to be will happen. So that always gets very complicated for me.

The Possibility of Death

I was just very practical about it. Like most people don’t survive a stage 4 diagnosis. The statistic I think is, 12 or 14% of stage 4 colon cancer patients are alive 5 years after their diagnosis.

If you are a stage 4 cancer patient and you are friends with other stage 4 cancer patients, most of them are going to die. That was a really hard thing to deal with. And then I also struggled a lot because people kept saying things like, you’re the strongest person I know. If anyone can beat it, you can. And every time someone would say that to me, I’d be like, oh, I’m definitely dying.

It’s such a weird pressure because what if I die? Then have I let all these people down? Was I not as strong as they thought I was?

I’m not a warrior. It’s not a battle. It’s a disease. I didn’t sign up for this. I’m not a soldier. I think Norm McDonald said, um, when you die, the cancer dies with you.

I always appreciated that because I think that people mean well, again. But, like, I’m not a warrior. I’m not out fighting. I’m on my couch watching Parks and Recreation, trying not to throw up.

Putting up a strong front

It’s this idea that you have to be this strong front to everybody. And it’s like, no, we’re tired.

Like we’re tired and we’re cranky and we’re annoyed and like, I was so hot and people, very lovely people kept sending me blankets and I was like, I just, I’m so hot. And one of the main side effects of oxaliplatin is that you can’t eat, drink or touch anything cold. I had a very high cold sensitivity, so I was always having to drink hot drinks, hot chocolate, hot apple cider, hot water and lemon.

The last thing that I wanted was to be wrapped up in a blanket. But I really appreciated everybody that sent them to me.

If I am miserable on top of how terrible it is, what’s the point then? So I’m going to try to have the best time, like you’re going to try to make the best out of a bad situation. And it’s hard to do.

But I had incredible people that stepped up and came and took care of me, and there was so much good that I got to experience.

Reaching out, giving back

I recently donated my hair. I did it when I was diagnosed, also because with colon cancer, with the main chemo, you don’t lose your hair. But I was so overwhelmed with all of the love and the gifts and the things that were coming to me. I donated my hair after my first round of chemo, and then just 5 years later, I donated it again.

Any time that I felt like I could give back in any way, that was really important.

People are nice to you because you have cancer. Everyone seemed to go out of their way to offer things. And I think that’s also the other thing, it was really difficult for me to ask for specific things.

So everybody stopped checking in on me and it was like, oh, because everyone said, I don’t want to bother you. And I just would say, it’s not about like telling someone you’re thinking of them or, hey, I’m going to stop by with, you know, X, Y, or Z. I think those are sort of things that are super helpful.

And for me to be able to share as a stage 4 patient, to give hope to other stage 4 patients, that there’s someone in front of them who is going through it, who went through it somewhat recently and is okay. And that can be a little bit of pressure of like, I get nervous that if I do have a recurrence, I’m somehow letting everybody down.

It feels like a very strange space to live in. But again, things like this. I’m so grateful to be able to share my story with other people who will be able to watch this and know that there is a light at the end of the tunnel, or that there are things that they can do to help themselves.

I think that everyone’s experiences are going to be different. The fact that colon cancer is now the number 1 cancer death for men 20 to 40, and it’s the number 1 cancer death for men and women combined 20 to 40. And we still aren’t doing colonoscopies for people. I think that that’s the big thing that needs to be addressed.

Access to colonoscopies, access to Cologuard, access to things that are clearly needed because the number of people that reach out to me, women in their 20s on Tech Talk who will message me and say, I made my doctor do a colonoscopy, they said they weren’t going to find anything. They did a colonoscopy. They removed precancerous polyps and they said, you saved my life. And I think that the price of a colonoscopy, the access to health care, all of these things, it’s going to cause so much more issues because the number is rising. It’s something environmental. My geneticist says they don’t know what it is.

And for people that were born in the 80s and 90s, I just think that access to colonoscopies needs to be a bigger thing on everybody’s mind. I will also say that I did call my doctor’s office of the gentleman who said, this is what I think is wrong with you, and I’m never wrong. I spoke to the office manager because I wanted to make sure that he knew that he was wrong.

Mental health struggles

The big thing that people don’t sort of warn you about is that everyone’s around you and it’s very structured. And then once you finish, you don’t have that anymore. And that to me is when my mental health tanked.

I really struggled as my friends were starting to pass away from treatment, being a former stage 4 cancer patient who doesn’t have cancer any longer. But maybe it’s Schrodinger’s cancer, right? You don’t know until the day you have the test and the day you have the test. You know that that day you didn’t have cancer. That can be very difficult.

I started to have panic attacks and had to stop working on the show that I was working on because my mental health got so bad. Actually, I had a panic attack so bad I couldn’t drive for about six weeks. I didn’t think I’d be able to work again.

My primary care doctor at the time wouldn’t prescribe me anti-anxiety meds. He wanted me to rule out anything medical. So I went through endocrinology, ENT, cardiology, neurology. I had a brain MRI to make sure I didn’t have cancer in my brain. I saw every doctor under the sun. But the problem is, they were all specialty. They come in, they do their test, and if it’s not them, they just leave. So I was just constantly feeling abandoned by all of my doctors and my primary care doctors.

And then finally I made it through all the different doctors. I was feeling suicidal and was really struggling. It was really upsetting that no one was sort of listening or paying attention and feeling really guilty because I survived. I couldn’t live the way that I was feeling, the way that my brain felt. I couldn’t sustain that and I felt like nobody was paying attention. To anything other than their specialized thing. And so I had guilt on top of everything else. My brain just felt like it was fighting me all the time.

And the mental health aspect of chemo as well, which my friend Megan called black cloud days when you were having a bad day. I was talking to someone and I kept saying, it’s okay to have a black cloud day. And her husband kept saying, but we’re always going to look for the sun. And I was like, but you have to allow yourself to sit in what feels bad sometimes.

The better we felt, the worse we felt mentally during our cycles, because the better you felt physically, the closer you were to going back and having another round. You physically felt better, you were able to do more things, but you knew that the better you felt, the worse you were about to feel. And so I think that the structure of how you can help somebody who’s going through chemo and everybody is going to need something different.

Resources that can help

I think that whatever little thing you can hang on to and help you find your people, you should explore.

ColonTown is a great resource on Facebook. And TikTok has become another big thing for me. I created a TikTok account to spread awareness for colon cancer and young people, but also the idea of struggling with mental health after your cancer finishes because nobody talks about it. There isn’t as much support for that. There’s support when you’re going through it.

UCLA has free psychiatry, psychology services. You can get a therapist, and I had a great one. Not enough attention is paid to your mental state after your treatments are finished. And so that’s always been a really big thing for me, which is, people say, oh, but you’re better now. And it’s like, you’re never fully better. It never goes away.

I should also say that I craved oranges, and I learned later that oranges are an anti-nausea food, and pregnant women drink them and people on boats when they’re getting seasick.

Solutions

I had a meeting with a psychiatrist who I just saw to prescribe me meds that I should have been given six weeks earlier. And within two weeks it completely changed everything in my life. And I also now have a new primary care doctor who is lovely.

I’m wearing my Chadwick Boseman T shirt. It’s all of the lost potential of a human being that colon cancer took away. Like colon cancer took away massive potential not only from Chadwick himself, but from every person that that passes away.

And I think that the struggle of having cancer, of dealing with cancer, and then dealing with its aftermath is something that is really important, and I would love to figure out a better way to sort of platform all of that.

I’m going on a beach vacation with my sister and her friends, next week to celebrate five years, I have my scans on the 28th.

I’ll meet with my oncologist on the first, and it all seems like a fever dream, because when you first get diagnosed and when you’re in it, it feels so far away.

“Snowboarding”

When I went in for my first round of chemo, I sat next to a man who was a couple years older than me. His colon cancer had spread to his esophagus. And I was so scared and so unsure of what was coming and what to expect. And he was on his 5th round.

He sat there and walked me through everything that I could expect. He talked about the cold symptom called broken glass syndrome. If you eat or drink anything, even walking too quickly, the air that you inhale is too cold and it can set off different things. He just talked me through everything in such a gentle, sweet way.

I have shared with every single person that I have talked to about this because a lot of people reach out on TikTok or on Instagram, I have many conversations with strangers who have just been diagnosed, or have friends or family that have just been diagnosed, and I walk them through everything like he did for me.

What he said was, on my good weeks, I go snowboarding. And so in my first round when I was having my worst day and I felt like I couldn’t do anything and I couldn’t move, and I felt so terrible in my head, I just kept repeating, he went snowboarding.

He did not go snowboarding feeling like this. So you will not always feel like this because in the first round you don’t know when it’s going to end and you feel like it’s never going to end. And so I just kept saying in my head, he went snowboarding. And that to me was the hope that I would get better.

Thank you for sharing your story, Elizabeth!

Inspired by Elizabeth's story?

Share your story, too!

Name: Grace A.
Diagnosis:
- Acute myeloid leukemia (AML)
Initial Symptoms:
- Headache that lasted 1 week
Treatment:
- Chemotherapy
- Stem cell transplant

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

Thank you for sharing your story, Grace!

Inspired by Grace's story?

Share your story, too!

Holly’s Myelofibrosis Story

Post author By Chris Sanchez
Post date June 25, 2024
No Comments on Holly’s Myelofibrosis Story

June 25, 2024

Holly’s Myelofibrosis Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Holly was only 25 when she was diagnosed with primary myelofibrosis.

Holly’s diagnosis was only one of a series of sad and traumatic occurrences at that particular time in her life. She had earlier lost her unborn daughter at 32 weeks due to a blood clot that passed through her placenta, and had to be placed in intensive care afterwards due to the discovery of more blood clots elsewhere in her body. Two weeks afterwards, she experienced a seizure and thrombosis stroke.

Over the succeeding year, Holly increasingly experienced symptoms that led to her undergoing a bone marrow biopsy, which revealed her cancer. What’s more, she discovered that her cancer might actually have had something to do with her daughter’s passing.

Holly continues to grieve her loss, but her life has begun to take a turn for the better. Her treatments have been effective—and she is now expecting another little girl.

Holly’s story is a testament to her resilience, the inner strength she gained, and her ability to glimpse the blessings in her life behind all her negative experiences. She shares her story with us today to help others who may find themselves in similar situations.

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

Name: Holly S.
Diagnosis:
- Primary myelofibrosis
Initial Symptoms:
- Severe fatigue
- Throbbing pain in left calf
- Significant weight loss
- Itching and rashes
- Bruising
- Shortness of breath
Treatment:
- Oral chemotherapy: hydroxyurea
- Immunotherapy injections: peginterferon

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

Table Of Contents

Holly's Myelofibrosis Story
Related Cancer Stories
- More Myelofibrosis Stories

I feel like I can overcome anything as long as I just remain positive.

Introduction

My name is Holly. I’m from Invercargill. It’s a small city at the bottom of New Zealand.

I am a single mum to a boy called Ambrose, who is five, turning six in October.

I was recently diagnosed with primary myelofibrosis in September of 2023.

And, yeah, just been navigating life as a single mum and just dedicating my time to him. Whilst dealing with this.

Pre-diagnosis

Initial symptoms

My first real symptoms of primary myelofibrosis basically start back in 2021 and April.

I was 32 weeks with my daughter and I started getting pain in my calf, just throbbing pain.

So I was getting constant massages to try get rid of it. Initially thought it was pre-eclampsia. I was also experiencing extreme fatigue a lot throughout the pregnancy.

And then one day I was in the supermarket and I started getting a lot of pressure in my abdomen. I didn’t really think much of it and went home.

And then I started having contractions around 9 p.m. and they lasted until 3 a.m. I started experiencing fevers and sweats and because I had had such a horrible experience with my previous midwife, with my son, I left it and I didn’t want to bother my current midwife.

And so then I’d contacted her in the morning about it, and we went down to the hospital.

She did an ultrasound and found that there was no heartbeat.

Loss of her daughter

So then I had to give birth to my daughter. And it was just a horrific, horrific delivery.

Yeah, it lasted for a few days, and I was put on these inducing pills. They gave me too many of them. And her head basically went through my uterus; I suffered a uterine rupture during labor.

So then I was rushed into theatre, and I lost 1.5 to 1.7l of blood. After that, I was in an ICU for about a week due to complications, including pneumonia.

I had a really high heart rate. I had heart failure. And they didn’t really understand what was going wrong.

And then they found that I had had a blood clot in my heart, in my lungs, and a DVT (deep vein thrombosis) in that right calf. So I’m guessing all the massaging had possibly broken the blood clot off into different parts of my organs.

So they think they also think that it caused my daughter’s death. A blood clot had passed through my placenta, causing a placental abruption.

Seizure and stroke

So I left hospital, and then two weeks later, I had a seizure and a stroke, and I was rushed back into hospital. They had found that I had had a thrombosis stroke in my brain.

So I was put on warfarin for well over six months max. And then, originally the hematologist thought that I had blood clotting disorder.

So she put me on warfarin, then took me off it for about a year just to see how my blood platelets were going to be. And they weren’t coming down, they were rising.

Discovery and diagnosis

That’s when I started having my other symptoms. And they came on quite, quite quickly because I wasn’t on any sort of medication at that time.

I started just being extremely, extremely fatigued. My arms were really, really weak. I lost 20kg without even trying, within 3 months.

I started bruising, like all over my body and the weirdest places. Itching. Crashing randomly. Constant shortness of breath.

It was it was horrible and I just I couldn’t function at all. Throughout the day.

So then the doctor sent me to have a bone marrow biopsy. I was officially diagnosed with primary myelofibrosis in September 2023.

Reaction to the diagnosis

I guess that unknown feeling I felt within those two years of not knowing. It’s sort of hard to really know. I guess I was just going through day by day.

I initially thought because I had two blood transfusions, I thought that it was all the blood transfusions that were actually causing all these symptoms, and I just thought that was normal. And I also thought because of all the physical complications I went through, my body was taking a longer time to try and heal from all of that.

And then, straight after all of that, I was thrown straight back into being a parent, single parent. Yeah, it was pretty crazy.

So when I went in for the bone marrow biopsy, I felt really numb to it all, I think because so much had happened previously, I was just on autopilot, like, okay. Yep. We’ll do this.

After I got the diagnosis, I was absolutely distraught because I didn’t know much about the disease at the time.

And I didn’t know anything. If I was going to lose all my hair, or if I was going to have to take more time being away from my son. So many thoughts running through my head.

But there’s more. As it turns out, my cancer might have had something to do with my daughter’s passing.

When my cancer was diagnosed, they didn’t really say that they thought that I had it when my daughter had passed. It wasn’t until a few months ago that they had sort of written it in doctor’s notes, speculating that it had caused my daughter’s passing and that I’d had it while I was pregnant with her.

But yeah, the feelings around it. I was more so angry at the hospital and my midwife for not monitoring me closely enough, but I guess they couldn’t really do anything about it.

But yeah, it was a terrible, terrible time. I really lost myself and my relationship fell apart; I just wasn’t coping.

I had turned to drinking a lot, so that was like my medication while trying to be a single mum and trying to just push, push forward.

And yeah, so when they had told me that they thought that I might have had it when I was pregnant with my daughter, I’d already had a huge feeling that it had caused it before they even said anything.

Treatment

Oral chemotherapy: hydroxyurea

My treatment plan was to go on an oral chemotherapy called hydroxyurea.

So I started on 500mg. My platelets weren’t really doing anything. So they were going to double the dosage.

Discovery of pregnancy, and shift to immunotherapy injections: peginterferon

And then a week later I found out I was pregnant. And I was a mess because I thought, I’m gonna have to terminate this baby.

Then they congratulated me, and put me on peginterferon. It’s immunotherapy that’s administered through an injection. I do this myself, once a week, on Sunday nights.

So I’ve been on peginterferon and aspirin, um, throughout this pregnancy and it’s brought my platelets right down.

I’m also on clexane as well, just to prevent blood clotting.

I’ve been in normal range for the last few months, and I’ve felt the best that I’ve felt in the last few years, and everything’s just looking amazing with this pregnancy.

So I’ve been really privileged, even, I guess, divinely orchestrated.

Side effects

That being said, I’ve been experiencing some side effects for the immunotherapy.

I’ve had a lot of hair thinning, acne, a lot of fatigue. And loss of appetite. I don’t really have much of an appetite. I’ve started bruising again, too.

But I actually had more symptoms with the hydroxyurea than I did with the peginterferon.

So at this point I don’t have any bone marrow scarring. I just have a lot of fibrosis.

Looking forward

New treatment plans haven’t been discussed with me at all because I’m pre fibrotic with the primary myelofibrosis.

So they for now they haven’t discussed anything with me. And I am open to other treatments if need be.

A stem cell transplant has been brought up. But I’m sort of on the fence about it, because I’ve heard such horrific stories of people that have gone through it.

I don’t know if I want to put myself through that.

… over time, this cancer, it’s really taught me how resilient I am. And how much I’ve just trusted that whatever’s meant for me is meant for me.

Even if the cancer does get worse over time, it really has taught me to live in the moment and live in stillness and just be grateful for even the smallest things.

Takeaways and lessons

In the beginning my mental health was really, really bad. I was thinking the worst of everything.

But then over time, this myelofibrosis, it’s really taught me how resilient I am. And how much I’ve just trusted that whatever’s meant for me is meant for me.

Even if the cancer does get worse over time, it really has taught me to live in the moment and live in stillness and just be grateful for even the smallest things.

Yeah, it’s been a huge challenge, but it’s been one of the best things to happen to me as regards my mindset.

I feel like I can overcome anything as long as I just remain positive.

I guess I also really started to find myself. After I got diagnosed with myelofibrosis, I had an answer as to why my daughter passed away. And then I knew that it wasn’t my fault, because for a long time I blamed myself. And I felt that I could finally move forward. I had that closure.

Then that’s when the healing really started. So when, when they got the diagnosis, the healing really started. So I guess it was a little blessing in disguise, even though it was what caused it all.

Now, I’m pregnant with another little girl. I have obstetricians monitoring me every four weeks, and also multiple scans.

I am 33 weeks at the moment, and they’ve planned all these scans to make sure that everything’s fine. I’ve got phone consults with my hematologist, monthly blood tests.

And my midwife, she’s amazing. She was like, don’t worry. If you know you have an issue, just ring me and I’ll come down in the middle of the night. We can check. She’s very, very onto it.

And she’s always happy to do extra tests and scans and things to make sure that everything’s good. So they’ve really looked after me now, this time round.

I’m due on the 2nd of July, but they’re going to get me an early C-section at 37 weeks due to the uterine rupture that I previously had.

In closing, I guess my message is, you know your body better than anybody else does.

If you have an inkling of whether you’re pregnant or you may have cancer if you have an inkling that there’s something wrong—put yourself first and go and get it checked.

Thank you for sharing your story, Holly!

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