There are so many stories on FORCE and so many members willing to share their experiences. We hope these profiles can help you connect with our community and get advice from people like you!
Previvor, BRCA1, preventive oophorectomy in 2007, bilateral prophylactic mastectomy w/ recontruction in 2008
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My paternal grandmother died of cancer and both paternal great-grandmothers died relatively early of “female” cancers. My paternal aunt was diagnosed with breast cancer at age 51. She participated in a study at Sloan Kettering in NY and was found to carry the BRCA1 mutation. In 1999, at the age of 32, I had genetic testing as part of that study, in conjunction with research being done at the Lombardi Cancer Institute in Washington, DC. I learned that I too am BRCA1+. Recently married, I chose to do increased surveillance of my ovaries and breasts while I started my family and went about my life.
In 2006, when I turned 40, the constant screenings and anxiety about “what if” became overwhelming. I have 2 young children and I want to see them grow up. My husband and I embarked on a 6-month research mission to determine the best course of action for me. Every doctor we spoke to said the oophorectomy was a must. The prophylactic mastectomy was a tougher decision, but in the end I decided to go forward with it because the options for reconstruction are much better if you don’t have cancer--and I wanted the option to take HRT.
Making the decision to have the prophylactic surgeries was very difficult. Many of my friends thought I was being too aggressive, although they would never say it. I was also terribly afraid of going into menopause.
As I look back, I don't think I would change anything. I'm glad I initially opted for surveillance and waited to do the surgeries until I was 40.
FORCE is really the only organization dedicated to BRCA+ individuals. The information, resources and community are invaluable. I only wish I had found FORCE earlier! I've become passionate about educating others about hereditary cancer and FORCE has given me a vehicle through which to achieve this, first as a local outreach coordinator and now on a national level.
The surgeries were hard, but in the end, I don’t regret my choices. I have peace of mind and know that I did the right thing for me and my family. I've been given a gift...the gift of knowledge, which has enabled me to make choices that may ultimately save my life.