My breast cancer diagnosis in 1996 truly changed the direction of my life. I became involved in cancer advocacy and education and discovered that I loved this work and realized that it was my life’s mission. It was a big surprise to be diagnosed with cancer at 40 years of age, and as a man, having breast cancer was doubly surprising. Breast cancer in men is rare, making up a little under 1 percent of new breast cancer cases each year. I think we all have a mental list of things to worry about, and breast cancer was not on my list.
At my diagnosis, I was an Assistant Professor of health services administration at Ithaca College and wanted to learn what I could about this disease. I stopped by the Ithaca Breast Cancer Alliance (IBCA), a patient support organization started in 1994. I spoke to a volunteer who provided me with reading material that helped explain my proposed treatments which were mastectomy and chemotherapy, followed by tamoxifen. After completing my treatments, I joined a support group within IBCA which helped me deal with those “post-treatment blahs”. I eventually began volunteering with the organization, despite being the only male breast cancer survivor, and in 2000 I became the Associate Director. The IBCA broadened its scope in 2007 to serve people with all cancers and changed its name to the Cancer Resource Center of the Finger Lakes to reflect that mission. Three years after that, I became the Executive Director. I think being a man with breast cancer made it easy for me to connect with women with cancer, and, of course, I could connect with men with all types of cancer.
I learned about the DoD Breast Cancer Research Program (BCRP) through individuals connected with the IBCA. They shared their experiences with me and I applied for and began serving on BCRP peer review panels in the early 2000s. These panels bring together scientists, clinicians, and consumer advocates to review research proposals, and these reviews help determine which ideas will receive funding. Serving on a scientific review panel allows advocates to influence the direction of research and to learn from–and become friends with–esteemed researchers and clinicians. Including advocates as collaborators with scientists and clinicians provides a wonderful synergy, reminding all parties involved that, in addition to being a disease that affects cells, cancer is also a disease that affects people.
Serving as a reviewer was a bit overwhelming at first. I really had not interacted with scientists before, but I quickly realized that we shared a common vision of better understanding, preventing, and treating breast cancer. I also became aware of the intellectual challenges of studying cancer – it is incredibly complex. As a consumer advocate and reviewer, my main role is not to judge the science in the research proposal, but to comment on the potential impact of the research on patients and the general community. Even so, I enjoy asking questions about the science itself. I might say, “That is an elegant idea, but is there any chance it can be used in humans?” Sometimes a scientist on the panel will remark, “I am happy that you asked that question.”
I think it is so important to be involved in the DoD BCRP. We have an impact on the science that is funded and we have an impact on the work of our fellow panelists when they return to their own research. They understand our concerns and learn the importance of communicating in accessible language. Advocates can and do make a difference.
In October 2017, I stepped down from my role as the Executive Director of the Cancer Resource Center, a decision motivated by a health issue unrelated to my cancer history. But even in retirement, I keep busy. I continue to volunteer with the Cancer Resource Center, and meet other male cancer survivors every Friday for the breakfast club, a support group for men that I started years ago. I have also accepted a part-time role at Cornell University’s Physical Sciences Oncology Center to find other ways to bring cancer survivors and researchers together, an effort funded through the National Cancer Institute.
Ironically, in a sense, if I had not been diagnosed with cancer, I would probably still be teaching. I am really quite happy with how my career changed. I discovered this mission has been a perfect fit for me.
Last updated Wednesday, October 27, 2021