Renee’s Stage 3-4 Relapsed IDC, HER2+, Metastatic Breast Cancer Story

Renee shares her story of stage 3 breast cancer before she relapsed and was staged at 4, or metastatic breast cancer. She details how she was able to get through chemotherapy, a bilateral mastectomy, and radiation.

In her story, Renee also highlights how she parented with cancer, how the diagnosis impacted her marriage, and how she has managed treating her cancer like a chronic illness.

Take it one day at a time. I know they say that, but it’s so true. You are going to be so overwhelmed. I joined Facebook groups at first and had to unfollow them.

There is so much advice out there. You have to decide what’s best for you.

Renee N.

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

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Diagnosis

What were your first symptoms?

My kids and I were dancing around. My son accidentally knocked my boob, and it hurt really bad. I went upstairs and looked at it and felt it.

It felt hard, and it felt big. I started crying right away. I suspected it was cancer. 

What happened at the doctor?

I called my family doctor and saw her a few days later. All she did was feel it, and she told me it was breast cancer.

She was going to send me for screening, but she was pretty sure. She had seen a lot of breast cancer cases before.

For the first 2 weeks, I wasn’t really okay. I came home and worked from home for a bit. I was a mess. I was terrified.

I was waiting for all the testing. When I got those results, I found out it was stage 3.

Chemotherapy

What was the chemo regimen?

The surgeon said I would probably do chemotherapy first and maybe we could do a lumpectomy, but that depended on how well chemo worked. 

I did 4 rounds of AC (Adriamycin & carboplatin) chemo. My first round put me in the hospital. I had an infection in my port. I ended up in the hospital again after my third round. We reduced the dose for my fourth round.

Then I had 4 rounds of Taxol. That wasn’t as bad. I had a lot of bone pain with the first round of that, but the next 3 were okay because they adjusted my meds.

Surgery

What was the mastectomy like?

After the AC chemo, I had a scan. They knew then and there that it hadn’t shrunk enough to have just a lumpectomy. My surgeon suggested a mastectomy at that point.

I had scheduled the mastectomy. Then, 3 weeks before that, I decided to go ahead with the bilateral mastectomy.

Mastectomy surgery recovery

I was nervous. The only surgery I’d had before was a C-section. I was most nervous about the pain I was going to experience after.

I wasn’t really nervous about losing my breasts so much. They were killing me. I wanted them gone. 

I remember the anesthesia hurting. The needle was painful. I don’t remember much of waking up, but I know I wasn’t in pain.

They told my husband that everything went well, and he told me because I was out of it for a while after I woke up. 

It was a day surgery. I came home and put my husband’s shirt on. I had bandages around me. Someone had told me not to look when the bandages came off. I was so numb that I wasn’t in any pain.

Relapse

Remission to relapse

At my first visit after the surgery, I got the official NED declaration. I was done with treatment on December 31, 2018. When I was told I was NED, I didn’t know if I fully bought into that.

It was really hard to get back to my normal life after that. It felt like nobody really understood me and my emotions. Just because I was NED didn’t mean I wasn’t worried a lot.

When my Herceptin was done, I was having some pains in my chest. I was going to the ER sometimes. It ended up being nothing. They said it was anxiety.

Then 2 months later, I started getting headaches. I thought I was going insane. Turns out, my headaches were something. 

How did you find out your cancer was metastatic?

I had headaches constantly for about a month. I was going away on vacation, and I went knowing that I very well could be in metastatic relapse. I just wanted to enjoy myself.

When I got back, I got really dizzy. I called my doctor and went to the after-hours clinic and wasn’t going to be able to get an appointment for about a month. 

I worked the system and went to a different hospital in a different town. I presented myself with constant headaches. The doctor saw me and ordered a CT scan. Then he came in and told me. 

I think I already knew before I found out. My twin sister, daughter, and mom were there with me.

It wasn’t until I told my son that I started crying. After that, I was a mess for 2 weeks straight.

I did Herceptin and Perjeta after that. I had some bad diarrhea from that, but I was okay. My oncologist was nervous about those drugs, though, because they don’t get through the blood-brain barrier, so he put me on Kadcyla. That’s what I’m currently on. 

It’s an infusion I get once every 3 weeks. I’ll be doing this until it stops working. I had some bad neuropathy from it, so I paused for a few months, but I’m back on it. I get extreme fatigue from it, too. My nose drips sometimes, but it’s not constant. That’s pretty much it. 

What’s your status now?

I get scans every 2 months. I was stable in December 2019. I was fairly stable in the beginning of March 2020.

There was this one spot, but they’re not worried about it. They think it’s from radiation because it’s still in the tumor area.

Reflections

How are you coping mentally and emotionally?

I went and saw a counselor at the cancer clinic. She helped me process things a lot. I have a palliative care doctor as well who helps me process things. I have Facebook support groups.

I faced my mortality, and it just gets easier to face it.

Your support system

My husband has been very helpful. He’s taken up a lot of the housework, cooking, and all that. My kids have helped. Maybe not as much as I’d like, but they’ve helped. They’re all teenagers. 

I have a twin sister, and she’s amazing. I don’t know how I could’ve gotten through this without her. I also have another sister who is very supportive as well.

We talk every day. What I like about my twin is we talk about normal stuff. We talk about what we’d like to do this summer and shopping, and we make future plans. We talk about the everyday. 

My mom comes to all my chemo treatments with me. I love that time with my mom.

Others have offered to come, but I don’t want them to because that’s my time with my mom. I like how she looks after me.

I’ve had some great friends look after me. I’ve lost some friends who’ve distanced themselves. I’ve had some great new friends who have stepped up, too.

We’re a hockey family, so we get a lot of support from other families. We live in the suburbs outside a big city, so a lot of neighborhood families have helped out with meals and things. 

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

Cancer’s impact on your relationship with your husband

It’s so hard. We had just gotten married. Then 2 months later, I was diagnosed. Before that, we were together for 3 or 4 years.

I felt supported, but there was a lot of tension in the house. Then, when the stage 4 diagnosis came along, we really connected. It was like nothing else mattered. We realized what was important. 

A lot of the lack of communication was me. It took me going to a counselor to find ways to express how I was feeling. I didn’t understand his side of things.

I was like, ‘I’m the one with cancer,’ but then I realized that it was scary for him, too. 

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

If you have a good oncologist, trust in them, but also be your own advocate. If you’re going to do your own research, make sure it’s not Dr. Google research. You’ll learn through the experience. 

Try to see the positive. Maybe it won’t be every day, but find it. I’m not saying, “I’m so glad I had cancer.” I’m not. Practice gratitude, though, because having a negative attitude is not going to help you. 

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