Genetic Testing and High Risk Groups

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Angelina Jolie’s recent announcement to the world of her very personal prophylactic double mastectomy deserves our respect and appreciation. No doubt, her decision to have the surgery was one of great anguish. Her courage of stepping into the world limelight about it was and is incredible.

In my opinion, the question of surgery is far less complicated for someone who actually has been diagnosed with cancer. At the time I was MISdiagnosed with stage 1 breast cancer, I made the same surgical decision for myself. The existence of breasts was totally insignificant compared to the existence of my life, especially as a mother of two. It was, in fact, a no-brainer for me, even though I was not a candidate for reconstructive surgery. As a result of a last minute PET scan which I insisted on having prior to the scheduled surgery, a test my original doctors did NOT feel was necessary for me to have, my worst nightmare was confirmed. The cancer had already spread. I was disappointed and felt helpless that the surgery would no longer be of benefit to me. The surgery was cancelled the DAY before it was scheduled to happen! (Take note – being an aggressive and information-seeking patient is a GOOD thing, and it has become my mission in life, because of that experience, to encourage others to become such patients.)

Almost as an after-thought, and as a Jewish woman of Ashkenazi (Eastern European) heritage, which most American Jews are (more than 90% in America / more than 80% worldwide), I went in for genetic BRCA 1 and BRCA 2 testing, mostly for my daughter’s sake. Ashkenazi Jews (like some other ethnicities) have a higher than normal genetic mutation for breast cancer. These mutations greatly increase not only the risk for breast and ovarian cancer in women, but also prostate and breast cancer among men. My sister was also tested after she was diagnosed with breast cancer. We were both certain that our tests would come back positive. But, they didn’t, and we were shocked. So what’s up with two Jewish sisters, both with breast cancer that was NOT considered to be genetic? And, what does that mean? Were our cancers caused by environmental factors? Possibly!! Catching, like the flu? Probably not. But considering the fact that only 8% or so of such cancers are genetic, what are we to make of this?

For one thing, genetic testing is important for those who have higher than normal risk factors in their genetic makeup. Insurance companies should unquestionably pay for testing for such people. It certainly is cheaper to pay for these tests and perform prophylactic surgeries than it is to pay for years of cancer treatment, or prolonged deaths.

And secondly, ANYONE who has a close relative suffering from cancer should be entitled to insurance paid participation in HIGH RISK PROGRAMS. Many hospitals and cancer centers offer such programs, and they are the only way to PREVENT or maximize finding cancer at the earliest possible stage. I believe my sister owes her life to the high risk SISTER STUDY she participated in after my diagnosis. My daughter began participating in a HIGH RISK program at age 20, and will be continually monitored with MRIs and other better than mammogram scans forever. Our beloved sons/nephews have been given a precautionary heads up.

So while this conversation may be an uncomfortable one for many, when dealing with cancer, it is a critical discussion both women AND MEN must have.

Copyright 2013

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