Erin’s Stage 2B-4 Relapsed IDC Triple-Negative Metastatic Breast Cancer Story

Erin shares her metastatic triple negative breast cancer (TNBC) story, one that started after she felt aching in her left breast. She details getting through surgery, chemotherapy, and radiation therapy.

In her story, Erin also highlights important quality-of-life topics, including how the diagnosis impacted her relationship, the importance of patient self-advocacy, and what support helped her most.

Give yourself time to heal. Give yourself time to feel scared and sorry for yourself, but then you have to choose life.

Erin C.

---

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

---

I went online again, and it said 100% it was cancer. That really scared me. I ended up having the mammogram and sonogram the very next week.

What were those first tests like?

That was a bit of a blur. The mammogram came back clear, but I knew that there was something wrong. When I got the sonogram, I pointed very specifically to the place where I was feeling it.

They spent a lot of extra time there with the wand, and they wound up finding something right next to the chest wall. 

The mammogram doesn’t pick that area up, so I really had to advocate for myself. If you have small breasts especially, you really need to speak up about where you think something is going on.

After these 2 scans, they said they needed to get me a biopsy right away. I was going to my brother’s wedding 2 days later, so I waited on the biopsy. That was scheduled for when I got back.

What was the needle biopsy like?

That was very traumatic for me because I was deathly afraid of needles. I called my doctor before I left for my trip and when I got back, and no one would give me any Xanax or Valium.

I got there the day of the biopsy, and I said, “Is there anyone here who can prescribe something for me?”

No one could. I just ended up having a panic attack in there, which I knew was going to happen. 

When you tell someone you have panic, they don’t listen to you when you tell them you have pain. They think it’s just the panic talking.

I don’t respond to anesthetic like most people do. I feel pain much earlier than the majority of people would. They didn’t give me enough anesthesia, so I could feel them taking the sample with excruciating pain. I could feel the blood dripping down from where they went in. 

It was really difficult, and the doctor sort of made fun of me. He was like, ‘You were really difficult, weren’t you?’

How did you process the diagnosis?

They called me on the phone. I didn’t know they could give a cancer diagnosis over the phone, but that’s what they did. The radiologist called me and gave me his cell phone number to call him back.

I was about to go into a rehearsal. It was a Friday evening, so I called him because I didn’t think anything serious would be delivered over the phone.

He answered and said, ‘Your results came back positive. You have cancer.’

Meeting with a surgeon

The radiologist was very kind in that he had scheduled an appointment for me with a surgeon the next day, which was a Saturday. She opened up her office for me because I was so young and had no family history. They wanted to get on it really fast.

I did a lot of research the night before. I knew what questions I wanted to ask. She was very kind and took her time with me. She couldn’t give me my staging just yet. They needed to do surgery first. 

We talked about my timeline. They gave me the option to do surgery first and then do chemo and radiation. Most people start with chemo, then do surgery, and finally do radiation.

My tumor was supposedly 9 mm, so maybe that was why she decided to do surgery first. Maybe she thought she could get it all and not have to do chemo. I don’t know.

Describe the surgery

During surgery, she found out what she thought was a 9-mm tumor was actually 2.3 cm. I went from what would’ve been stage 1A to a 2B in a matter of a conversation. One of my lymph nodes was also involved. 

I went home after surgery to heal, and she told me the pathology and staging at the follow-up. I was shocked about that size. She didn’t handle my shock the way I wanted it to. The person I had in my consultation was not the same person who was giving me my test results. 

I had the opportunity to switch surgeons at that point, and I did. The surgeon, at that point, was the one in charge of all my care and appointments. I just didn’t feel comfortable with her anymore, so I made the switch.

Switching medical treatment centers

I had a consultation with an oncologist and radiation oncologist. Both of them were at different hospitals. They sent me to Mount Sinai for my medical oncology. I went to a radiologist that was a little bit farther away.

When I went back to the medical oncologist, I asked him if I could change my radiation to the same place. Then the oncologist referred me to the surgeon there to do my port placement.

Then I had everything in the same place, so that was nice. Plus, the staff at Mount Sinai are all so great. They all worked so well together and with me. They have a breast center there, too, and that made everything so easy.

I had limited nausea. I experienced some neuropathy, especially in my feet. That made it hard to wear high heels because I couldn’t feel my toes. 

I also felt like I had the flu. I was tired and achy. I wasn’t much fun to be around. I tried really hard to keep my energy and mood up, but it wasn’t working all that well. 

I did lose my hair. I was using a special service called cold caps. I had difficulty with them. They worked to keep about 50% of my hair, but I’m a bottle blonde. I dye my hair, so it was dry that it broke off. I needed to get a wig anyway.

»MORE: Cancer patients share their treatment side effects

What was the worst part of chemo for you?

Losing my hair, for sure. I had all the emotional junk you get from losing your hair without the physicality of it. I only lost half of my hair, but I still didn’t get what I wanted from the cold caps.

What I wanted was to keep my long hair. I’m an actor, so my hair was everything. All the sudden, I was rethinking everything. That was very, very hard.

What’s your advice for someone who’s about to start chemo?

I’m a fan of reading and researching, but you just have to know where to draw the line. Read what you can handle, don’t believe everything you read, take what you cant to your doctors, and ask questions based off of what you read. Don’t take information off of the internet as gospel. 

Advocate for yourself. If you’re not good at it, grab a friend who can do it for you and take them with you. If you don’t pay attention to your body and speak up, your doctors won’t know what they need to do for you. 

Get a port if you can manage it. I had 2 infusions via my veins, and it was awful. If you can at all get a point, do it.

Don’t listen to all the fears you read on the internet. Just discuss it with your doctor as an option because intravenous chemo collapses your veins and is just terrible.

Did you experience side effects from the radiation?

I had fatigue, but luckily no nausea. My only skin issue was just a slight redness on the actual area. It was like a mild sunburn. It wasn’t painful, and that’s pretty atypical.

Most people have quite a bit of discomfort and burns with that much radiation. I just didn’t. I did absolutely everything the doctors told me to, though.

I put lotion on it several times a day and all that stuff. I don’t know if that’s what made a difference, but I didn’t have any major issues.

How did you feel when you were done with treatment?

After radiation, that was it for treatment. I’m triple negative, which means I’m negative for 3 major causes of breast cancer.

For everyone else, they have the hormone therapies. With triple negative, you don’t have to do any of that. 

I knew I didn’t have any evidence of disease after surgery. The radiation was preventative. Even though I knew I didn’t have any evidence of disease left, it was still so nice to be done with treatment. 

I didn’t really have a ‘woohoo, remission!’ day, but knowing I didn’t have to go through any more treatment was great. It was just so nice to know that all the treatment I’d been through had worked.

Relapse

How did you find out you relapsed?

In September 3 years later, I started feeling sick. I thought that I had pneumonia. I got treated for that, and then in early October, I had another X-ray. They noticed there was something in my breast.

He said, “Just call your gynecologist. It’s probably just a cyst.” I was like, “Uh, you know I’m a cancer survivor, right?”

Next steps for lung metastasis

He said he needed to do some testing. He needed to biopsy the lung tumor. That would tell him for certain that was breast cancer that had spread to my lung rather than lung cancer. 

They opted to do surgery for that biopsy rather than a needle biopsy because of the location of the tumor. I did that within 2 weeks of finding out I relapsed.

They ended up taking out the entire tumor, which was fantastic. They hadn’t planned to do that, but they got in there and saw they could. 

Describe the radiation for your brain metastasis

That was really freaky. The mask was scary. Your whole head is held down to the table. At that time, I was having a really hard time breathing because of my lungs and was coughing a lot. That, plus the claustrophobia, was not fun. 

The session was divided into 2 parts. They were half-hour treatments, and I could take as much time in between as I needed.

I could even take the mask off if I needed to. Luckily, I only had to do that once, and it cleared it up. It took care of it. 

Gemzar and carboplatin side effects

I’m not having side effects this time around. When you’re early stage, they want to nuke you so it doesn’t come back. This is milder chemo.

This is like, “There is no cure, so we want to give you the best quality of life.” The amount of chemo is pretty small, so I’m very lucky.

What’s the check-up protocol?

I have exams every week. Then every 3 months, I have a brain scan, a bone scan, and a CT scan for my lungs to check in. The tumors have shrunk down quite a bit from this chemo.

The cancer itself caused me to lose my appetite, so from January until about early August 2019, I had severe issues with appetite and lost about 40 pounds.

I don’t know what it was about the cancer that was making me feel that way, but I know it was the actual illness because that was before chemo started. I’m better now because the tumors have shrunk, but it was rough for a while.

What helped you through the lowest times?

Chemo, mostly. It has made me feel so much better. I also started taking Lexapro and Abilify. I had been on them prior to this whole thing, but I couldn’t even take my medication because I was so depressed and out of it. 

Once I started taking my medication again, my appetite came back. That was interesting to see how that helped.

How has your experience affected your work?

With my theater company, we’ve kept going. I’ve been performing through all of my treatment. It just had to be done. I don’t know how I survived, but I did. It was not easy. The rest of my acting life was put on hold.

All the sudden, a bucket list becomes important. I run into issues with money a lot more now. How do I create enough money to do all the things I want to do before I die?

I’m just trying to keep a positive attitude as much as I can.

How has your cancer affected your relationship with your partner?

We’ve had some ups and downs. It’s really scary for him. He didn’t know how to handle the diagnosis. He got thrust into caregiver mode, and he can barely take care of himself.

One time, he told me, “This is so unfair. This is not where we’re supposed to be in our lives.” 

Things are really good, though. We’ve been lucky enough to go to counseling. It’s sponsored by the chemo center. I don’t have to pay for anything to go. That just helps us navigate the disease together so neither of us are by ourselves in it.

Do you have any advice on self-advocacy?

Take notes in your appointments. That will help you to know if something is different from time to time.

I would recommend bringing someone who is more of a bulldog about things if you would rather them advocate for you.

It can be hard to ask for help. What are some practical ways people around you can offer support?

Reaching out and saying hello is always welcome. If the sick person doesn’t get back to you right away, it’s no big deal. They’re sick and tired. Try again. 

Financial help is obviously always appreciated. Everyone going through cancer should consider a GoFundMe or something similar. Even meal trains are so helpful. A lot of people want to help but don’t know how. Meals are a great place to start. 

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

Being able to talk about my situation with other people is great. I love when people comment on my posts and genuinely want to know how I’m doing. It makes me feel less isolated.

---

---

Invasive Ductal Carcinoma Stories