Rachel’s Stage 1B IDC Breast Cancer Story

Rachel shares her stage 1B breast cancer story, one that started after a delayed mammogram showed a lump. She describes undergoing a double mastectomy, chemotherapy, and hormone therapy.

In her story, Rachel highlights how she managed through the hair loss, the importance of self-advocacy for patients, and the transition to survivorship.

---

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

---

She said, ‘Are you in a good place to talk?’

I said, ‘Yeah.’

She said, ‘I have bad news. You have cancer.’

I think at that time, I was just so shocked. I didn’t even know. I had no emotions. I think I’m still not really processing everything yet. It was just kind of devastating.

Everything progressed really fast after that — from one minute being diagnosed to the next minute having a mastectomy, followed by chemotherapy.

Describe the ultrasound you underwent before diagnosis

The technician just scans your breast, and they’re able to look on the monitor to see if there’s any hollow spaces or dark spaces.

If the breast is gray, the tissue is gray. If there’s a black spot, that’s an indication of a mass, whether it’s benign or cancerous.

She just scans over the breast and is able to take a picture of all the different sides.

The ultrasound probably took about 15 to 20 minutes, because the technician was really took her time. She was really going over each area, dissecting from one quadrant to another. At the same time, she was taking pictures.

Whatever area that she stopped at, she would take a picture, and then she would just make sure that she had the best pictures for the doctor to be able to look at the scan and determine if it was indeed what they suspected.

Describe the biopsy after the scan

The biopsy is a little bit different. I really didn’t know what to expect. The doctor has a long rod, but it’s really thin. It’s almost like a plunger.

All I felt was a sting. It was very uncomfortable. What the doctor does is taking out that tissue, right in the office.

You don’t have to go under any anesthesia. It’s just a poke. Definitely uncomfortable, but nothing to be afraid of.

I think more of the fear is what are they going to find out? The biopsy was really quick. Probably the same thing, about 15 minutes. The doctor took 2 samples of the tissue. Pretty easy.

Waiting for results

I waited less than a week, but it was very agonizing because you want to know now.

Living in Hawaii, everything has to be sent to a mainland lab. I think that was what was painful.

During that week, I tried to not think about it. I kind of kept my mind occupied with other things. By the time I forgot about it is when my doctor called with the results.

»MORE: Dealing with scanxiety and waiting for results

How did you break the news to loved ones?

I had started a new [work] position. Right before my start, I had a colleague [whose] wife was going through cancer at the same time.

I told him, “I think I may need to talk to your wife.” He said, “Oh, nah, nah. It’ll be okay. You’ll be fine.” Then once I found out about the cancer, I told him, “I need to talk to your wife.” 

He was devastated. She was devastated. She actually came with me to my appointments, because I’m single. I went through this journey — really, when I look back at it — alone.

I broke it to my friends. I think the hard part is, what do people say?

They’re too afraid to say anything, or they say the wrong thing.

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

Did you get a second opinion?

No, because I trust my doctors, and it would cost money for me to get a second opinion. [The diagnosis] was pretty straightforward.

Again, I’m glad they caught it when they did. I think for me to get a second opinion, it would just prolong my agony.

How did you decide where to get treatment?

I was always at Kaiser, and I decided to stay there. For me to have to change, it’s just such a hassle, and it would end up costing me way more financially.

What did you like about going to your larger-size hospital?

I have to say that I had a great cancer care team. I think the problem is there’s either not enough chairs or too many cancer patients, so they’re always busy.

Other women going through the same thing at other local hospitals [said] it’s the same. There’s either too many cancer patients, or you could have more chairs and still be out of room.

I think for Kaiser at least, they do their best. They’re just very kind-hearted to people. I’ve never had a problem.

Did you undergo genetic testing?

Yes. I did the genetic testing. They did find something, but it was inconclusive. 

Mastectomy & Recovery

Choosing a double mastectomy

I decided to do a double mastectomy, even though the cancer is on the right side.

The reason why I chose both is because I think I would be more devastated looking into the mirror and seeing one breast.

Also, I don’t want chances of cancer coming back in my left breast and the doctor saying, “Hey, you have cancer.”

Describe the double mastectomy surgery

No prep work. The only thing they did is scheduled my appointment, then I just went in and had the surgery. It was pretty upfront. Full anesthesia.

I think it took the whole day, and then I stayed a night. They wanted to keep me overnight. I think that’s pretty common.

I remember waking up and having a bandage around my chest with 2 tubes, one on each side below my armpits.

They’re called drain tubes. It wasn’t that I was sore. I think I was just numb. It didn’t really hit me until I took all the bandages off probably 3 weeks after.

I don’t know how I reacted. Shocked. I think I’m still in shock, like I said, but it’s the reality. My breasts are gone.

My doctor was pretty upfront that this is what’s going to happen. She left enough skin so when they do have my reconstruction surgery, she said it won’t be a problem.

Have you had reconstructive surgery?

I have not. The reason why is because I’ve had a few other surgeries since then. I don’t want to start the reconstruction until my other surgeries are done with.

I’ve had various injuries before cancer and before chemo. Right after chemo, it just did something.

It just made my bones really weak, and it has exasperated a lot of my old injuries. I’ve had 2 shoulder surgeries. I’ve had a back surgery. 

»MORE: Read more patient experiences with surgery

I just felt real cloudy. My mind was real cloudy. I just felt like my body was hallucinating. I don’t know if you can understand that. Then just sometimes feverish and just the body aches.

Then my taste changed. I had certain cravings, wanted to eat, but then I didn’t want to eat. It was just very frustrating.

I had nausea. It wasn’t as bad as some people’s. I think I had more stomach pain and stomach issues than anything. Stomach pain instead of a nauseating feeling.

Did anything help prevent or reduce the side effects?

Sometimes the medicine. They had me on oxycodone. That helped a little bit. Not sodas, but drinks that were fizzy.

I tried to eat because I didn’t want to get weak or sick, but it’s just different how the body reacts.

I remember one week I had cravings for chocolate donuts and French fries, and I never eat that stuff. Then when I start eating it, it’s like it doesn’t taste. It’s bland.

Are there day-to-day side effects to the hormone therapy?

Joint muscle pain. It seems like I’ve already gone through menopause, and then weight gain. I have not been able to lose weight.

My doctor mentioned to me to try 2 weeks of getting off of tamoxifen or stopping tamoxifen to see if it helps, but it didn’t.

Any advice to others who are about to go on hormone therapy?

Just be prepared. If weight gain is an issue, prepare to maybe change the lifestyle [and do] more healthy eating, whether it be plant-based, vegetarian, or whatever it is that you can do to not gain weight.

For the joint and muscle pain, I don’t know, because I’m dealing with it now. No matter how much I have to tell my doctors, there still isn’t a solution yet. I know some women do CBD.

For me, I can’t because I’m subjected to random urinalysis, so I can’t do it. I guess whatever works for them. My doctor recently recommended that I try red light therapy. I’ve done 2 sessions, and I can’t really tell you if it works or not.

»MORE: Read more patient stories of hormone therapy

Hair Loss

Describe the hair loss

I have pretty long hair. I have a lot of head shots because I’m a background actor, so my hair was my identity. Then I was told, “14 days after chemo, you will lose your hair.” 

It was exactly 14 days. I was washing my hair, and it didn’t come out in clumps in the shower. It was when I brushed my hair, just clumps of it came out. 

That was on a Sunday. I had to go to work on Monday, so I called my friend. She was going through chemo at the time, and I asked her if she could come over and shave my head.

I didn’t want it to happen, but I didn’t want to go to work with just patches of hair.

I think I’d be more devastated if my hair started falling out at work. She came over, and she shaved my head. It was different, but I think what really hit me is when I lost it all.

She had shaved it short. Then, I think it was like a few weeks later, it was in patches. I had to get it shaved — like shiny, bald head.

»MORE: Patients describe dealing with hair loss during cancer treatment

What was the hardest part about the hair loss?

It changed my look, and I felt like people were looking at me or staring at me. I felt really vulnerable.

Then having to go to work, I wore a baseball cap for the most part. Then I’m at work, and my head is just burning up wearing this hat. Then I take the hat off. It was a vulnerable feeling.

Embrace it. You will feel awkward, embarrassed, but that’s you. It’s a sign of what the cancer and the chemo has done, but be proud.

You’re alive. Know that the hair will grow back. It’ll grow back healthy and curly.

I think, just for women, we need to be more, “This is who we are. Cancer cannot define us.

Our mastectomies and the bald heads can’t define us. The cancer wants to try to beat us, but we can beat it back.

Quality of Life

What got you through the toughest times?

Everything happened so quickly, and then I started a new work position right when I found out that I had breast cancer.

There was the stress of my boss, who was very unsympathetic. I don’t even know how to describe it, but just some of the things that she would say.

Do you understand I’m going through chemo right now? I was just numb. I think it’s bad, because I’m sure it’s going to hit me.

What’s your advice to others on how to deal with the stress?

Just find somebody who understands, who really understands, whether it’s a group.

I would’ve been involved with a group like this or any other cancer group with women that have been through that circumstance. Friends and family may say what they say because they don’t know how else to say it, but they don’t know what you’re going through.

I would just suggest to get a good support group, have one that understands, and a better-understanding person or women that have already been through this.

I’m more sympathetic, and I can understand. When I see somebody’s hair’s coming back or they’re bald and wearing a cap, I can reach out to them or say something to them because I know exactly what they’re going through.

Were there moments you had to advocate for yourself in and out of treatment?

No. I feel like I’m having to speak up for myself now, which is pretty odd, with some of the side effects that I’m experiencing.

It’s really hard. I remember talking to my oncologist — great guy. He took time out in the lobby to talk to me, and he answered every question that I had.

He gets it, but it just seems like because what I’m feeling with my side effects, that’s really not his lane. It’s now pushed over to another doctor in their lane, and they don’t get it.

They don’t understand my side effects and what I’m going through. I just don’t know really what to do anymore.

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

Describe the transition to survivorship

There are some people that I’ve noticed, mainly people at work, they say that my hair’s growing back, so you’re fine.

But they don’t understand that I still feel a certain way, I get tired during the day, or maybe I can’t think clearly.

I think it’s great that the hair grows back, but at the same time, it’s like a person forgets that you just went through a life-altering experience.

What’s your advice to others on how to get support?

Everybody has different circles, but I also feel that it’s important to get involved in a cancer group because I can be honest and open with somebody who’s been through cancer. They know exactly what I’m going through.

We can help each other on that. My issue may be different than yours, but it’s the same, whereas if I talk to somebody at my work, they can agree but don’t really understand.

»MORE:  What kind of support cancer patients say helped the most

I ended up going to the emergency room a few times with a high fever.

If I had to do this all over again, I probably would’ve taken more than just a week off, but at the time, my circumstances were a little bit different because I just started a new position.

It was temporary, but I was also competing for it. I felt like I had to be there, otherwise I wouldn’t have gotten this permanent job.

»MORE: Working during cancer treatment

Did you get any financial assistance?

No. I am very fortunate because I have insurance. I was able to get medical financial assistance. Then I had used all my leave, all my sick leave, all my annual leave, but my employer has a voluntary leave.

What other members have done is they’ve donated hours and hours of sick leave to me so I could stay home on sick leave and still get paid.

Without that, I don’t know what I would do.

Message to other patients

When I say to try to find somebody that you can rely on, I’ve tried that, and it’s a little bit difficult.

If you can’t find a person or if you don’t have people around you, then just go to a support group, cancer group, care group to walk you through it.

Then just find that person that can stand by your side and that understands. It’s the compassion, because that’s what a person needs when they’re going through this terrible disease.

---

---

Invasive Ductal Carcinoma Stories