Listen to HER2: A Time Before Herceptin

August 9, 2017

Today, nearly everyone diagnosed with HER2-positive breast cancer receives treatment with the targeted therapy trastuzumab (Herceptin). But 15 years ago, that was not the case. For Listen to HER2, Susie Brain writes about having been diagnosed with HER2-positive breast cancer before trastuzumab was widely available.

It’s hard to imagine today that less than 20 years ago, there were no targeted therapies for HER2-positive breast cancer. In 1998 a new drug called Herceptin was approved for women with advanced HER2-positive breast cancer. Eight years later, in 2006, Herceptin was approved for the treatment of early-stage HER2-positive breast cancer. At last, life expectancies for women diagnosed with HER2-positive breast cancer were about to improve.

Never had I thought that I would become a breast cancer “statistic.” I was busy channeling my passion for the environment as executive director of a local non-profit organization when I found a lump in my left breast while showering.

Unfortunately I was diagnosed with stage IIB, HER2-positive breast cancer in 2004, before Herceptin was approved in early-stage breast cancer. Little did I understand then what it meant to be one of those approximately 20 percent of women to be diagnosed with this fast-growing, aggressive subtype of breast cancer.

Because I was able to return to work a week after my lumpectomy, I naively thought I wouldn’t need chemotherapy! In the past, I had observed friends impacted by the debilitating side effects of chemotherapy, so my biggest fear upon hearing “you have breast cancer” was that I would need chemotherapy. My oncologist made every effort to make me feel optimistic but said I would definitely need chemotherapy, and that an aggressive “dose-dense” treatment regime was recommended for this type of cancer. Having infusions of doxorubicin (Adriamycin), cyclophosphamide (Cytoxan) and paclitaxel (Taxol) every two weeks for more than two months was very tough on me. Side effects, physically and psychosocially, were extreme. I lost weight and became anxious, as I could no longer multitask at my job. Radiation and 5 years of hormonal therapy followed, which compounded my fatigue and lethargy. That, combined with my “chemobrain” cognitive issues, made me realize I had to give up my work. Instead, I started to volunteer in the breast cancer community, first with a local group, then with Living Beyond Breast Cancer, as I felt, as clichéd as it sounds, that I wanted to “make a difference.” I trained to become an LBBC Breast Cancer Helpline volunteer, offering support and resources to newly diagnosed patients, work I continue to this day.

I slowly got through the “fog” of treatment and regained some “normalcy” in my life. To make sense of my breast cancer diagnosis, I learned as much as I could about the disease and particularly HER2neu. I read Her-2: the Making of Herceptin, a Revolutionary Treatment for Breast Cancer by Robert Bazell, and I cried like so many other women while watching the movie Living Proof, the story of the brave women who joined the Herceptin study, helping to get FDA approval for the drug.

Even though study guidelines excluded me from receiving Herceptin in 2004, I did have the discussion with my oncologist about the possibility of retroactively taking it even though I was almost two years out from active treatment when it was approved by the FDA. On her advice, and as guidelines didn’t approve Herceptin as a stand-alone medication until 2008, I didn’t receive it.

You might think I was upset with this decision, but because I had taken so long to recover from dose-dense chemotherapy and had such a dismal quality of life at that time, I just had to hope the toxic cocktail of AC-T would work for my breast cancer. Statistically, I knew that in the past, for many women, a diagnosis of a HER2-positive breast cancer offered little hope of long-term survival. Not having been treated with Herceptin, I often wonder, “Why am I still alive?”  Like many other survivors, I fear recurrence and think of it as the “shadow of cancer.” Mostly the shadow remains small and dark, but some days when I hear a friend or colleague has had a recurrence or has died of metastatic disease the shadow looms larger and gives me pause … yet, I am not alone. I know several other women who were diagnosed with HER2-positive breast cancer around the same time as I was and they are still living a full life. I suspect research will show that our subtype is more heterogeneous than first thought, which might offer some explanation on why we are still around.

Today I continue my patient and research advocacy activities and feel truly blessed to be alive and able to support breast cancer patients and research endeavors, particularly in precision medicine. Luckily there are more treatment options, new combinations, and even biosimilars in the works for HER2-positive breast cancer that minimize the role of toxic chemotherapy regimes and optimize the best HER2-targeted drug for each patient. Quality of life is improved by avoiding the kind of toxic chemotherapy I had. In my case though, I hope that “more (chemotherapy) was better!”


Susie Brain is 67 years old. She was born in England in 1950 and came to Palo Alto, California with her Scottish husband, Sam, in 1980. When Susie isn’t supporting newly diagnosed breast cancer patients or involved in her research advocacy efforts with investigators at Stanford and the University of California, San Francisco, she and Sam love to take trips to the rugged and beautiful Northern California coast. Read more Listen to HER2 stories here.

 

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