Back in July, I wrote a piece about my decision to get tested for the “cancer genes” – the BRCA1 and 2 genetic mutations. And, since it’s October – Breast Cancer Awareness Month – I felt a follow-up to my previous piece was necessary. (1 in 8 women will get it in her lifetime.)
I chose to undergo testing at a clinic that is part of the Department of Human Genetics at Emory University’s School of Medicine. I felt more comfortable going to a real research department, with trained geneticists and researchers, than I would have at a cancer department at a hospital or in a doctor’s office. Equipped with a spreadsheet of a complete family history of cancers – along with copies of my mother’s, aunt’s, and cousins’ test results – I went to my two-hour appointment and left behind a couple of vials of blood. (A cheek swab also was a viable option, but my other relatives underwent blood tests and I wanted my own testing to be consistent.)
Making the decision to get tested was easy for me. Waiting for an entire month for the results was not. I stayed as busy and as focused on “normal” daily life as I could, but I also began thinking through my options. Since I’m the oldest of four kids, and most like my mother, I knew I’d be the one to test positive for a mutation – just like she did. Plus, in the grand scheme of things, I knew that I was the one who could handle it. I had the time, the support, and was in the phase of life where I could undertake risk-reducing surgeries if I so chose.
Four weeks to the day, I got the call. I was calm. I was prepared. I had my calendar in hand, ready to make an appointment to talk through my options. Just imagine then how completely taken by surprise I was – how totally disbelieving I was – when I learned that my blood test came back negative. I wanted to be happy at that moment, but I couldn’t be. Now I’d be worried about my two sisters and brother…
My sisters both live in Israel and were tested right after Rosh HaShanah. Yesterday, the baby of our crew learned that she tested positive for the BRCA2 mutation. At the age of forty-four, she now must decide how she will live with the knowledge that she has a higher risk than most of contracting ovarian or breast cancer.
As I try to be helpful and supportive of my sister’s decision-making process, I can’t help but do some research on her behalf. On the internet, I found a study that was conducted earlier this year in Israel, which examined the “Rates of risk-reducing surgery in Israeli BRCA1 and BRCA2 mutation carriers.” Of all women who tested positive, almost fifty percent chose to have a prophylactic oophorectomy (the surgical removal of the ovaries). However, only thirteen percent opted to have preventative mastectomies. (Not surprisingly, as a result of its high percentage of citizens of Ashkenazi descent, Israel has the highest number of these mutations than ANY other country in the world.)
By comparison, it’s interesting to note that in the U.S., forty percent of BRCA1/2 positive women opt for bilateral risk-reducing mastectomies. I wonder… Is this due to the influence of Angelina Jolie’s carrier status and her decision to have the surgery? Is it because American’s are cosmetic-surgery-prone anyway? (After all, we rank sixth among countries that have the most cosmetic surgeries done!)
Today, on the Today show, Angelina’s surgeon talked about her procedure and how he believes she may have saved lives as a result of her openness. I guess that, at the end of the day, that’s all that matters…saving lives. So, go get genetic testing; get a mammogram; go for regular check ups and screenings; be responsible and knowledgeable about your health and potential risks; be proactive and be informed. Pikuach Nefesh. We all must do whatever we can to save a life…even our own.
I’m here for you regardless of what you decide, Baby.