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!
Diagnosed with ovca, learned I was BRCA2 positive, had prophylactic mastectomy
I'm more than my risk… some fun facts about myself:
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I was in my middle 50s when I had stomach pains that took me to the ER. I had known something was wrong for weeks and was scheduled to have an appointment with my doctor. When the ER doctor told me there was a mass on my ovary, I wasn't surprised. I had thought I might have cancer, but it never occurred to me that it could be in my ovaries. The symptoms were not known to me at the time. Less than a week later, I had a complete hysterectomy and debulking with a gynecological oncologist. That was followed by six cycles of chemo. at some point, I mentioned being tested for BRCA but my doctor discounted it because no one in my immediate family has had cancer. My mother was over 80 years old at the time and healthy as could be. I decided to anyway and shocked my genetic counselor when I was foune to be BRCA2 positive. A year later I had a prophylactice mastectomy and reconstruction. I chose to do that because I had read too many stories of women who were undergoing chemo for recurring ovarian cancer, learned they had breast cancer and had to put their chemo on hold. I knew that wasn't good for fighting the ovarian cancer and I knew that was my biggest battle. I've been extremely fortunate that I have not had to go back on chemo yet, although my doctor and I are both minimalists and I am aware that many women would have chosen to have maintenance chemo at least, in my situation. But I get my CA checked every couple of months and see my doctor regulary.
I think the hardest part has been the fact that no one in my family, so far at least, have been willing to be tested for BRCA. I feel like my sisters and brother have kept their heads in the sand. I also have nieces and a grandniece.
I would have had a different breast reconstruction. Otherwise, I just feel fortunate.
I could not have made the decisions I did without FORCE. These women gave me information and courage to go for the prophylactic mastectomy. I will always be grately.
I feel very strongly that information is power. I know that some people don't want to know if they have a genetic defect because then they'd have to make choices (having prophylactic surgery of some type). But I see it as having more control over one's life, and when you've been diagnosed with cancer, you realize that your life isn't really under your control. The other thing is that some people feel that they would "catch" the cancer at an early enough stage to fight it easily. They don't understand that once you have a cancer diagnosis, there's no going back.