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Despite growing up in a medical family with a strong cancer history – my father’s mother and both of his sisters died from breast cancer – I wasn’t aware of my increased risk of breast and ovarian cancer until I was 65. While raising my son in East Africa, where tropical diseases were the most immediate concern, and believing that breast cancer was passed on in the female line, cancer was not on my radar.
Early in 2009 my sister, a doctor like my father, shared a conversation about BRCA she had with a breast surgeon at a medical conference. Despite the lack of data on risk among women over 60, I quickly decided to seek genetic testing. Counseling was provided by the University of Florida, but the test was not covered by Medicare. I dug into savings to cover the test and six weeks later the counselor handed me a brochure for FORCE with news of my BRCA1 mutation. I signed up with FORCE and made appointments with a breast surgeon for breast surveillance and a gynecologic oncologist to plan to schedule a preventive salpingo-oophorectomy. Thankfully, all of my routine tests were negative for cancer.
As Medicare bills arrived, querying codes and charges for my preventive care, I became concerned about the cost of surgery, and put it off for several months while trying to get reliable information on coverage and looking at alternatives. When a community gynecologic oncologist identified additional diagnoses and recommended a hysterectomy, combined with the oophorectomy, I moved forward. Midway through the surgery, she found a small ovarian tumor; the lab confirmed it as high grade serous ovarian cancer, and she carried out the full cancer staging. The tumor was Stage 1, found that early in only 5% of cancers of this type. I’ve been in remission since completing chemotherapy in 2010, and had a preventive mastectomy in 2011.
After corresponding with experts and lobbying with allies of FORCE in Congress on the issue of Medicare coverage for preventive services for high risk older women, I felt that paths to advocacy were closed, and looked for other issues I could work on. Two years ago, I completed the FRAT training, and in 2016 I served as a Consumer Reviewer of proposals submitted to the Department of Defense Ovarian Cancer Research Program. During two weeks of intensive reading, I learned a huge amount about new approaches to detection and treatment of ovarian cancer, and realized how important understanding of BRCA has been to this research. In early 2017, FORCE asked me to serve in as a Patient Advocate in a clinical trial for a new ovarian cancer therapy, and as an advisor for a pilot advocate training program with an industry partner.
FORCE has enabled me to use my background in public health and research, drawing on my experience as an older cancer survivor, to contribute to the ovarian cancer community. This year’s FORCE Conference provided the opportunity to network with women living with hereditary cancers – including older women – while expanding my understanding of the latest research.