Photos and text used with permission
of Mara Ginsberg
Breast cancer has been part of my life - all of my life. Before I was born, my maternal aunt was diagnosed with breast cancer at the age of 28. Four years later, when I was a toddler, my own mother was diagnosed at the age of 28. My aunt had her second diagnosis at the age of 36, and my mother also had her second diagnosis when she was 36. They both underwent the standard treatment of the time - Halsted radical mastectomy, the morbid and disfiguring surgery that removes the breast, chest muscles, and lymph nodes. They both died at the age of 44. I was 18 when my mother died, and in my heart I knew that my breast cancer story wasn't yet over. I had both of my children and presumed that one day, the shoe would drop for me as well. Sure enough, at the age of 36 I, too, was diagnosed. My children were 7 and 4. Wonderfully for me, the surgical and treatment options were better than during my mother's era, so I was able to have a mastectomy with reconstruction and chemotherapy. All these years later, I am still alive and my children are now 25 and 22!
Although I enjoyed the intellectual stimulation of my job as an Assistant Attorney General in the Appellate bureau of the New York State Attorney General's Office, I felt after two generations of breast cancer in my family I had to do something to positively impact the lives of other breast cancer patients in my community. When I was diagnosed with breast cancer and went through my treatments, I realized that, while there were many options available for women in bigger cities like New York, the resources in Albany and the surrounding areas were very limited. To that end, I created an organization to address this-To Life! was born in October 1998. To Life! was inspired by the desire to equip patients to become partners with their healthcare providers, which in turn has created a positive impact on patient care. We educate cancer patients and encourage them to remain their own best advocates for their health. While we don't give medical advice, we do guide patients in their dialogues with their physicians. We help patients to perform their due diligence in terms of researching treatment options and discussing them with their doctor. It's so important to be comfortable with the course of treatment you choose. We have offices in two locations, serving people in ten counties. All of the services from To Life! are free. We provide education seminars, one-on-one mentoring, health and wellness workshops, breast health and self-examination education, and a unique brand of support groups where women share, laugh, and learn ways of dealing with cancer and beyond. We've helped thousands of women.
Even while meeting the demands of being President of To Life! I remain committed to my professional endeavors as a lawyer, with an emphasis on both legislative and legal issues in education, technology, and health care.
But my professional work and my not-for-profit work here in the Capital Region is not enough to satisfy my "itch" to do more. I need to keep my pulse on what is happening with the science in preventing and treating breast cancer. Armed with the full and intense belief that this disease must not ravage any more families, I became involved with the Department of Defense Breast Cancer Research Program (BCRP). I first learned about the BCRP many years ago and was immediately taken by the opportunity to pore over scientific proposals and serve as a consumer who contributes to the selection of research projects that bring promising options to patients as quickly as possible. When I was first selected to serve as a consumer reviewer, the amount of scientific information I had to wade through was daunting. As I got more involved in the review process, I was amazed and so hopeful that a future for preventing and controlling this disease was closer than the last 40 years had brought us. After my first opportunity at an "in person" session I was energized and more excited and hopeful for our future-for the future of the next generation.
The scientific review experience is like no other experience I have had before or since. The mutual respect between the scientists and the consumers is profound. We, the consumers, help remind the scientists why they do the research that they do. The scientists make us aware how passionately they care for their work-and for our mutual cause-to prevent and treat breast cancer. I am grateful for the opportunity to participate in the BCRP, and I am grateful for the passion of the scientists and my fellow consumers.
Last updated Wednesday January 27 2016