Listen to HER2: Life with an ‘aggressive’ DCIS diagnosis is ‘a weird space to occupy’

Katie Benson was diagnosed with a large HER2-positive ductal carcinoma in situ, or DCIS, in 2013. She feels conflicted about having been treated with surgery alone, and about her place in the breast cancer community. For Listen to HER2, Katie answers questions about this in a Q&A with LBBC writer and content coordinator Erin Rowley.

Erin: Tell me about your diagnosis.

Katie: I thought cancer = chemotherapy + hair loss + radiation. I thought the “shock and awe” campaign was how all cancer was treated. I didn’t even know there were different chemotherapies for different types of cancer, and I only had a vague understanding that there were different types of cancer. As soon as I got home from the doctor’s office, I was reading everything I could find on breast cancer in an effort to understand what to expect, and the futile attempt to find a reason that I had breast cancer at 31 years old.

My first symptom was pain. For roughly a week I had pain in my left breast, and I kept feeling around to try and find what was hurting. And then I found it: a mass, a lump, a tumor – I didn’t know what it was, all I knew was that there was something in my left breast that was not in the right, and it hurt. I called my doctor who conveniently had an appointment available first thing the next morning. She performed a thin needle biopsy. As soon as she aspirated “it” the entire mood in the room changed, and I knew something was unusual. I still would have never thought it was cancer. After all, Dr. Google told me pain is rarely a sign of breast cancer.

An hour later she told me the biopsy showed ductal carcinoma cells. So much of that day is a blur, but that moment is crystal clear. It was Valentine’s Day and I was wearing pink shoes and pink heart earrings – not a care in the world – and it all changed in an instant. By the time I went home that day, I had met with the surgical oncologist, had a core biopsy, a mammogram, an ultrasound, and learned “it” was a 2 centimeter – yes, centimeter – malignant mass.

At the MRI two weeks later, the mass was 5 centimeters. It spanned two quadrants and was rapidly growing, so the oncologist recommended a mastectomy. Just one week later, when it and my breast were removed, it was 6 centimeters. However, despite the lump’s size and growth, all three lymph nodes the surgeon removed were clear!

When I went to the post-op appointment the next week, I was ready for all the cancer tropes: “Let’s fight this battle of cancer! This is war!! Let’s kick cancer!!!” The oncologist gave me the amazing news the surgical margins were clear! ”Hooray!” I mentally crossed off “radiation” on my battling cancer list.

Then he said the cancer was HER2-positive. “That’s one of the more aggressive ones, right?” I asked. “Doesn’t matter, it was DCIS” he replied. He started to wrap up the appointment. “What about that Herceptin drug?” Again, he replied, “doesn’t matter, it was DCIS.”  “What about that drug you take for 5 years that lowers the chance for recurrence?” I was starting to feel desperate for my treatment plan. “It was hormone-negative,” he replied.

Erin: How did you feel about being diagnosed with a subtype of breast cancer that is thought of as aggressive, and that is so closely associated with targeted therapies, but not getting those therapies or any other treatment post-surgery?

Katie: I knew I was supposed to be doing a Snoopy-style happy dance, but it was not registering. I had been told I had “carcinoma.” I had not one, but two oncologists. “Carcinoma and two oncologists equals cancer which equals chemotherapy and radiation,” I thought, “and I’m supposed to walk out of this office with nothing more than a card for a follow-up appointment?”

Erin: How has this experienced affected how you feel about where you fit (or don’t fit) in the breast cancer community?

Katie: DCIS is typically diagnosed as part of annual mammogram screening, and seen as microcalcifications lined up in a row. It usually isn’t discovered by self-exam like mine was. It usually isn’t a mass like mine was. And it usually isn’t treated with a complete mastectomy like mine was. I had a tumor that tripled in size in 3 weeks to 6 centimeters – large by any stage’s standard – yet was not invasive and did not require any treatment other than surgery. I had DCIS, but I didn’t have the typical DCIS experience.

On the flip side, I did have a mastectomy. Issues of breast asymmetry are a daily concern. Although I do have to add, for all the “flat and fabulous” gals, that I finally got fit with a prosthesis that is a near perfect match and I finally have the most beautiful mastectomy bras and not the sad medical supply-looking ones. I even have the holy grail of a bra with a deep V. The angst of how to dress this body is almost non-existent now. Not a day goes by that I don’t think about a recurrence. So some of the issues that face any breast cancer survivor still apply to me.

It’s a weird space to occupy. It feels like I had DCIS but I didn’t and like I had cancer but I didn’t. I don’t quite fit in with the breast cancer community, but I don’t quite fit in as someone who hasn’t had breast cancer.

There are some advantages to being an outsider. There is the harrowing statistic that up to 1 in 3 women diagnosed with an early stage breast cancer will go on to have metastatic breast cancer. As someone who’s had DCIS, I can tell myself how unlikely that statistic is to apply to me when the fear of recurrence grips too tightly. And I certainly have survival statistics on my side, especially now that I am 4 years out. Also, and I want to be very clear that I am not in the “cancer is a gift” club, but I do appreciate the perspective that having had a cancer diagnosis gives me. There is something very freeing about knowing what truly matters and not worrying about the rest.

Erin: There have been a lot of advances in treating HER2-positive breast cancer in recent years. Does that affect the way you think about your diagnosis and about your future, and the future of other people with breast cancer?

Katie: In 2014, I had the wonderful opportunity to become an LBBC Young Advocate and attend LBBC’s annual conference. The entire experience was life-changing on many different levels, and one of them was the empowerment of understanding exactly where breast cancer research and treatment was at that time, and having it explained in person by professionals and not at home on my couch by Dr. Google.

I attended one session specifically about HER2-positive breast cancer. The speaker was excited to share what was happening with targeted therapies and full of hope for what they mean for the future of HER2-positive breast cancer, and that hope was infectious. She explained how the HER2-positive cancer cells have too many receptors on the cell wall. First they had developed the targeted therapy Herceptin, and instead of killing any rapidly dividing cell like chemotherapy does, it binds specifically to those receptors to shut down the cell. I thought: “HOW COOL IS THAT?!” My mother had gone through chemotherapy for ovarian cancer 3 years prior, so the memory of that “shock and awe” campaign was fresh and in very stark contrast to a medicine that targeted specific cells. The speaker went on to explain that cancer is tricky and in some way was outsmarting the first targeted therapy, so they made another one, called pertuzumab (Perjeta) that targets the nucleus of that specific cancer cell to shut it down from the inside. AMAZING!

Obviously this isn’t foolproof or HER2-positive breast cancer would basically have a cure, but it does give me so much hope. If breast cancer research has come this far for HER2-positive disease, I have to believe a cure can’t be too far behind. If cancer research in general has come this far, I have to believe a cure can’t be too far behind.

I now have had a son and daughter, and it kills me that their medical history is “mother – cancer.” With a family history, what if they are predisposed to a childhood cancer? If I was diagnosed with breast cancer at 31, what does that mean for my daughter? The what-ifs can drive you crazy, but I do cling to the hope that the targeted therapies for HER2-positive breast cancer and the advancements in cancer research because of them will mean cancer treatment will look much different and be much more effective if I ever have to hear another cancer diagnosis for myself or a loved one.

Katie is 35 years old. She lives in Winterville, North Carolina with her husband, two children, two dogs, and one cat, and owns her own business. Read more Listen to HER2 stories here.