According to the American Cancer Society, this year 40,290 women and men will die of breast cancer. If you do the math, on average that’s 110 people every day. And that number hasn’t changed in 20 years. But when you turn on the news, you never hear: 110 people died of breast cancer today. If 110 people died in Iraq or in a train wreck or as a result of terrorism people would be outraged. It would be huge news. But there is breast cancer fatigue. People think: Yes, the diagnosis is bad, but you’ll be fine, so it’s not really that big a deal. Unfortunately, that’s not true. Why not? Because research dollars have not focused on the kind of breast cancer that leaves the breast and kills metastatic breast cancer.
In 1991, I was diagnosed with early stage breast cancer. It was found on a routine mammogram, in one breast, and the doctor gave me the option of a mastectomy or a lumpectomy followed by radiation. I was scared—and because I had two small boys I chose to have a bilateral mastectomy (both breasts) so that I would be sure never to have to deal with this disease again. After the operation my doctor said, “Go on with your life. You’re cured.” One year passed. Five years passed. Ten years passed. I thought I had beaten the disease.
Then, after twelve years I started having some trouble with my rib cage; the doctor suggested I get a bone scan. My ribs were fine, but my spine lit up like a Christmas tree. Those spots proved to be metastatic breast cancer.
Since my initial cancer had been hormone positive, I started taking an anti-hormone agent. Within ten months the cancer had spread throughout my skeleton to my liver. So we did a biopsy—which showed the metastatic cancer was hormone negative, and I now had HER-2 positive breast cancer.
Cancer can mutate. And research is finding that in 10-15% of recurrence diagnoses, biopsies show the metastatic breast cancer as being different from the initial breast cancer. Even within a particular site a tumor can be heterogeneous, containing cancerous cells with a different molecular makeup—one part is hormone positive and one part is hormone negative. Another problem with metastatic breast cancer is that your treatment may work for a while, but then the cancer becomes resistant. This disease is a real challenge. Certainly, it’s a challenge for the patient; it’s also a challenge for even the best clinicians.
Of course, no evidence of disease does not mean I’m cured. I still have regular scans, and still get regular infusions. But it means that the metastatic disease is too small to see. I feel healthy. I’ve had a long run—nine and a half years with no evidence of disease.
At the time of metastatic diagnosis, I was close to completing a 36-year career in education as a high school teacher and principal. When I received my news of no evidence of disease, I knew I had to use my teaching and speaking skills to advocate on behalf of other metastatic patients. But first I needed to educate myself about the science of this complex disease. I took a series of courses in the biology of breast cancer, clinical trials and quality health care offered by the National Breast Cancer Coalition (NBCC).
Now, I’m a consumer grant reviewer for the Department of Defense Breast Cancer Research Program and Komen; Chair of the Metastatic Breast Cancer Patient Advocate Subcommittee of the Translational Breast Cancer Research Consortium; member of the Advocate Advisory Committee for the University of Chicago Breast Cancer Research Program; Board member of the NBCC; and President of the Metastatic Breast Cancer Network, a founding organization for the MBC Alliance.
I’m involved in a lot of different initiatives, but as long as I can, I must try to make a difference. Many patients can’t due to the toxicity of the drugs—and they deserve better. Right now the majority of research really focuses on early stage breast cancer; only 7% of research grants funded between 2000-2013 related to metastatic breast cancer. But metastatic breast cancer is what kills. It’s not that we don’t have the brain power to help metastatic patients live decades with the disease; it’s just that we haven’t put our minds to it. AIDS went from being a death sentence to being a chronic disease. Today the mean survival rate for metastatic breast cancer is 2 to 3 years. I know one woman who lived 15 years. I’m at 12. I try to have a positive view: Carpe Diem. But, yes reality hits me in the face every day.