As soon as I found out I tested positive for BRCA1, I knew I had some serious decisions to make. I ultimately determined, after many years of conversation and research, to have my ovaries removed and to undergo a hysterectomy. Today's Blog is devoted to the best resources I've found that helped me make these very difficult choices.
First, I joined a support group for women who have tested positive for the BRCA1 and BRCA2 genetic mutations. The meeting I attend takes place once a month at the Mount Sinai Medical Center in New York City and is part of the hospital's Breast Health Resource Program.
It is the only program of its kind within the tri-state area of New York, New Jersey, and Connecticut. There are a limited number of support groups like this one in other parts of the country; your doctor and genetic counselor should know if there's one like it where you live.
I also went online and found two great websites. FORCE: Facing Our Risk of Cancer Empowered is a wonderful and supportive clearinghouse of information for any woman who has an increased risk of cancer due to family history or genetics. This website offers detailed explanations of what a BRCA diagnosis means and an analysis of surgical options. FORCE also connects women who are considering pre-cancer surgery with women who have already done it. Conversations take place over the phone and via email. I found every woman I spoke with at FORCE to be professional, knowledgeable, and astonishingly accessible.
The other website I've relied on is HysterSisters - an online community offering guidance and support for women undergoing hysterectomies. The site offers easy to understand descriptions of procedures and a candid discussion of what to expect in the days, weeks, and months following surgery.
One of the best resources I found needed to be requested online and came to me in the mail. Mary B. Daly, MD and Carol Cherry, MSN, RN at the Fox Chase Cancer Center in Philadelphia have written a powerful little guide called, Ovarian Cancer Risk-Reducing Surgery - A Decision-Making Resource.
You can get a free copy by emailing, surgerybook@fccc.edu
All of these resources have been invaluable. Please let me know what you've discovered along your journey.