When I was twenty-eight I was diagnosed with a rare, aggressive type of breast cancer. After my surgeon explained my options to me, I asked, “What would you do?” She was silent for a moment, and then she replied, “I don’t know. I can tell you what I think I would do, but I can’t possibly predict what I’d do if I were truly in that moment.” I remembered her words when I learned, at the time of my second cancer diagnosis seven years later, that I carry a mutation in the BRCA1 gene. I had to decide how I would manage the risks that are part of my DNA.
Experts don’t agree on the exact lifetime risk of breast cancer for women with a mutated BRCA1 or BRCA2 gene, but estimates have ranged from 55-89%, with the most recent research suggesting about a 65% lifetime risk, compared to a 12% lifetime risk for the average woman in the United States. Women with a BRCA1 or BRCA2 gene mutation have a lifetime risk of developing ovarian cancer estimated at 15-40%, while women without a BRCA mutation have about a 1.8% lifetime risk.
I chose to have risk-minimizing surgeries. I had bilateral mastectomies and reconstruction after I completed chemotherapy for my second breast cancer. A year after that, when I was thirty-seven, I had my ovaries, fallopian tubes and uterus removed. My body and psyche underwent changes as a result of these surgeries, but I can now say I feel happy and comfortable in my body. I don’t regret anything. My boys won’t have to say, “My mom died of breast cancer,” or, “My mom died of ovarian cancer.”
A few months ago, Dr. Mary-Claire King, the geneticist who discovered BRCA1, published a piece in the Journal of the American Medical Association advocating for population-based screening for the BRCA genes – that is, screening of these genes in every woman, at about age 30, in the course of routine medical care. To identify a woman as a carrier after she develops cancer is a failure of cancer prevention. About half of women who inherit mutations in BRCA1 or BRCA2 have no family history of breast or ovarian cancer and have no idea they are carrying cancer-causing mutations.A recent survey revealed that only 19% of US primary care physicians accurately assessed family history indicating a need for testing. Whether or not Dr. King’s wish comes true, genetic screening will continue to become more common, and as a result many more women will be faced with making difficult decisions.
A couple of days ago Angelina Jolie Pitt wrote a New York Times op-ed on having her ovaries and fallopian tubes removed because she, like me, carries a mutation of the BRCA1 gene. Two years ago, she famously shared her account of undergoing a preventive double mastectomy. She lost her mother, grandmother, and aunt to cancer. In Tuesday's op-ed, Jolie described the procedure she had last week and explained that it put her body in an immediate menopause (something that happens to every woman whose ovaries are removed). “I feel at ease with whatever will come, not because I am strong but because this is a part of life,” she wrote. Because of her celebrity status, what she has shared is like a public service announcement that will empower many frightened women to take steps to save their lives.