A HER2+ Diagnosis Interview
We recently sat down with one of our breast cancer advocates, Claire, to talk about her experience with breast cancer, specifically her diagnosis and what are the biggest challenges she has faced because of her diagnosis. We also asked her to talk about how she copes and finds her way forward. These were the questions we asked:
- Describe your breast cancer diagnosis journey (e.g., did you have symptoms, what lead you to be diagnosed). What type/stage where you diagnosed, did you get a second opinion, and what is your current treatment plan?
- If you had to pick one, which area of your life has been most affected by breast cancer?
- How do you manage/cope?
I'm 66 years old and my whole life, my mammograms were normal and always felt totally confident that they would remain that way for the rest of my life. But then when I turned 65, I started to feel, I never felt a lump, but I felt this pressure in my left breast and it was like pushing down on my top rib on my left side. So initially I did not connect it to a breast issue. I wasn't sure what it was but I thought it was something else. I went to my doctor and she said, I think you better go for a mammogram and an ultrasound and go see your gynecologist.
After this appointment I thought, okay, did she feel something because I could not feel anything. I always checked myself in the shower. It turned out there was something on the mammogram and the ultrasound so they sent me for a biopsy. The biopsy showed that it was breast cancer. I was devastated when I got that news and the breast surgeon said, based on the type of cancer it is, I had to start with treatment immediately.
The diagnosis was HER2+ stage 2. It was a two-centimeter tumor. So it had to come out. So I had the surgery, a lumpectomy, and then they installed my port, which is where the chemo goes. And then I went for 12 rounds of chemo and then, 30 days of radiation right after.
After the lumpectomy my margins were clear. It did not spread to my lymph nodes. So that was the good news.
I finished chemo in September. I finished the radiation in November and started Herceptin Hylecta through May. Now there is a hormone therapy they want me to take for 5 years. The side effects of this medication are very unpleasant so I had a followup recently with the doctor to get another opinion on my options. When I started taking the original medication and one side effect was depression. I got so depressed I couldn't stop crying. My husband helped me put it all together and reminded me that I hadn't acted like that until I started taking that medication. I wanted to see what other alternatives there were so I didn't have to struggle with depression and feeling the way I had been.
Getting a second opinion
When I first got diagnosed and heard I had to get chemo, I went into panic mode and I thought, I can't accept that and went for three more second opinions. I had Medicare and Medicare was okay with it - paying for multiple second opinions. So that was another lucky break because I had just enrolled in Medicare prior to my diagnosis. Every second opinion I went for said the same exact thing. This is the treatment, this is what you do. Don't question it. It's just what you have to do. However, while I was about three-quarters of the way through chemo, I found this integrative oncologist at MD Anderson who sees women to help them with vitamins and complementary medicine and he has been a great additional resource in terms of my treatment and care.
So this complimentary integrative oncologist is who I talked to recently because this five-year plan on this medication is making me very nervous because in addition to the depression, bone pain, and blood clots are also side effects. I'm still trying to figure it all out.
Breast cancer impact
Which area of my life has been most affected by breast cancer? I think the emotional part for me may have been the worst. I didn't know how bad it was. It ruined our social life, my husband and I, because we basically have been self-isolating now for over a year, just like I wrote in my first article. I know women, I didn't actually know anyone who had breast cancer, but when I had read about it - the fundraising walks, wearing pink tutus (I was supportive of them) but I never thought it would hit me and so I never really understood what it all meant and how horrific it could be. You don't see many articles about the daily struggle, the horror of treatment, and side effects. For me losing my hair was hard and difficult to describe. Everyone in my family has this big, giant, beautiful hair. Even as old ladies, we have nice big hair. And to have that gone, that was always one of the defining things about me - I might have a million wrinkles and cellulite, but I still have this nice big hair. On top of it, I got so sick and the fatigue was so bad. I could barely walk across my bedroom, and although my fingernails and your toenails never fell off, they got weird black spots and were really brittle and painful.
Helpful ways I coped with a HER2+ breast cancer diagnosis
These are some of the things that have helped me the most through my breast cancer journey.
1. Support hotlines - I found this to be a fabulous resource and helped me get through some pretty rough days! Many are free too. Also, individual counseling was a tremendous help too.
2. Family physician - She was very helpful and would even do research for me. She'd see me whenever I thought something was a little off when no one was understanding what was going on with me.
3. Medicare - They did not argue with me ever and I was able to get all of the testing and procedures I needed.
4. Support system - My family, friends, and a great counselor helped get me through the difficult days. I'll never forget my sister bought delicious apple bread. She would come to my house with wonderful presents of food and organic fruit and different things. My husband would be like, okay, I know you were up in the middle of the night eating cause I could smell the apple bread in the toaster. And I have a few friends that treated me like a queen. They brought me food and presents. One friend, I called her hysterically crying because I needed something from the drug store and couldn't get there. She went to the drug store and got me exactly what I needed. I remember this too - they had told me peppermint essential oil was good for nausea. So I called my friend, I said, I know they have it at CVS. She went for me and not only came back with the essential oil, but also peppermint spray for the room, and a bag of peppermints!
5. It's ok to be extravagant sometimes - I think it's about wanting to feel good and try to feel good about yourself. Don't feel guilty about pampering yourself. My husband or kids would get me what I needed - new bras, loose clothing, or cool pajamas for hot flashes.
One of the most surprising things about this experience is I laughed more than I thought I would, to be honest. Dark humor kept me going. The laughing was so helpful!
Have you gained new friends in your metastatic cancer journey?