How did I know I carry the breast/ovarian cancer gene? A genetic test, done through a blood sample in September 2011, started the ball rolling for me. The reason why I was tested began many years ago.
My maternal grandmother was diagnosed with stage 4 ovarian cancer in 1989 at the age 61, my freshman year of college. An amazing fighter, she lived an unheard of 11 years with the disease and was able to see three granddaughters marry and meet both of my children. She never had breast cancer, but she was a cheerful advocate for the power of prayer and positive thinking when it came to ovarian cancer treatment.
Breast cancer hit closer to home when a mammogram found spots in both of my mother's breasts in the fall of 2008. She had a double mastectomy, followed by chemotherapy and I am thrilled to say she is doing great now! She took the genetic test following her diagnosis to see if she carried the BRACA gene and since it was positive she elected to also have a hysterectomy. She did not opt for breast reconstruction since she was going through so many other treatments.
When my gynecologist learned of my mother's history, she encouraged me to have the genetic test myself to see if I was at a higher risk for having breast or ovarian cancer. I knew I wanted to do it, but working full time and being in graduate school and with my husband on the campaign trail for state representative I knew there was no way I was going to take any surgical precautionary efforts at that busy time even if my results came back positive. I did however start yearly mammograms at that time (age 37).
This fall when I was in for my yearly exam, the testing topic came up again. Knowing I was not getting any younger (40), I decided to go ahead and have it. It is a simple blood test, but it can cost over $3000; thankfully my insurance covered it.
It came back two weeks later; positive for a deleterious mutation BRACA 2, the kind that does not hit women as early in life and is not as fast growing. That was the good part. Not all gene carriers will develop cancer and vice-versa not all cancer patients carry the gene. Carrying the gene means I have a 45-84% chance of developing breast cancer by age 70, as compared to the general popultaions risk of 8% and a 27% risk of ovarian cancer compared to a less than 1% chance for the general population.
So that makes you stop and think...
Before you take the test they counsel you and ask if you know what you might do depending on the results. In some ways they encourage you not to take it if you are not going to do anything about it. I knew my Nanny would tell me, "Cam, if there is some thing you can do to change your path -do it!" She did not have that luxury 20 years ago, I could not let the opportunity pass me by.
A note about insurance and genetic discrimination: My regular family physician had a fit about my taking of the test when I was in to see her for back problems last fall. This totally surprised me as she harshly informed me I would never get insurance again (FALSE), etc. It was the first time I ever talked back to a physician as she critically asked me why I would ever do such a thing, telling her because I had seen family members fight their way through cancer. It made me really question my choice for testing, but using her logic did I want to have insurance to eventually cover my cancer or reduce the risk of it in the first place? In truth, the federal law HIPAA protects your results from determining your insurance eligibility & rates and most states have genetic discrimination laws. Really, wouldn't an insurance company rather reduce your risk up front than paying to spend years in treatment and surgery. I don't think I can return to her as I trust my physicians to be up to date on the most current practices and laws.
My next post will talk about state-of-the-art treatment for BRACA gene carriers.
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