A friend recommended an article on Facebook about a mother who chose to have a double mastectomy because she was at high risk for breast cancer. It wasn’t until I was about half-way through the piece—when I read, “I am fortunate to have a partner, Brad Pitt, who is so loving and supportive”— that I bothered to look at the byline.
Angelina Jolie wrote that she got tested for the breast and ovarian cancer genes because her mother died of ovarian cancer. Jolie found she carries one of them, BRCA1. “My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer,” she wrote.
Her decisions – to have a preventive double mastectomy and to write about her experience – have been hailed as heroic. As Dr. Elizabeth Swisher, a gynecologic oncologist and cancer genetics specialist, wrote for the Huffington Post (http://www.huffingtonpost.com/elizabeth-swisher-md-/angelina-jolie-double-mastectomy-_b_3292941.html):
Thank you, Angelina Jolie! Your confidence and courage is inspiring and will no doubt help thousands of women face the same difficult decisions. Knowledge is power, and understanding your genetic risk of cancer allowed you to take charge of your future and change your destiny.
Dr. Swisher argues for making genetic testing more widely available, saying that some women have inherited breast and ovarian cancer risks even though they don’t have a family history of the disease. For example, the risk may come to some women through the men in their families. “And even strong family histories of cancer may be overlooked by healthy women and their providers,” she said.
While Dr. Swisher hopes Jolie’s story will make women more aware of their options for genetic tests and subsequent treatment, others worry it will encourage more women to pursue preventive surgery that could possibly be dangerous and unnecessary.
As Dr. Aaron Carroll of the Indiana University School of Medicine wrote for CNN:
It’s a personal decision. It’s also a serious one, because there are downsides to a preventive mastectomy as well. First of all, it’s still a major procedure, and it carries all the risks of one; one should never minimize the risks of a big operation. It’s also irreversible, and some women do suffer psychological or physical consequences afterward.
H. Gilbert Welch, professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice, also expressed concern, pointing out that Jolie’s story “is not relevant to more than 99% of Americans women” because they don’t have one of the genetic mutations that put them at greater risk.
All the doctors agreed on two things. First, it’s important to know your family medical history. And second, decisions like Jolie’s are personal and should be made by a woman and her doctor. But the questions of whether more women should undergo genetic testing and whether preventive mastectomies are wise for women who aren’t at high risk are still up for debate.