When Angelina Jolie found out that she carried a gene that increased her risk of developing breast cancer–the same disease that killed her mother—he did something that shocked a lot of people: she had a double mastectomy, removing both breasts, neither of which was affected by cancer. For most women, the decision to have that kind of surgery is a private one, kept between the patient, her doctors, and her family.
But Angelina Jolie isn’t “most women” and she went public, doing interviews, writing op-eds, and openly discussing what she did and why. The result was what many have called the “Angelina effect”: dramatic increases in the number of women getting genetically tested for breast cancer as well as in the number of surgeries. Interestingly, women weren’t the only ones affected by the Angelina effect. The number of men having preventive mastectomies has skyrocketed, too.
We all know that breast cancer is a devastating disease, one that kills thousands of women each year. Efforts to increase awareness and to find a cure are everywhere, from public service announcements and postage stamps with pink ribbons to walkathons and NFL players wearing pink shoes. But what most people don’t know is that one percent of breast cancers occur in men. And besides having to endure the stigma of having a “women’s disease,” men with breast cancer typically have worse outcomes than women. As a result, more and more men are making the decision to remove both breasts—even if only one has a tumor.
Removing the healthy breast along with the diseased one is called contralateral preventive mastectomy (CPM), and the rationale behind this type of aggressive treatment sounds perfectly reasonable: removing both breasts brings the risk that breast cancer will develop or recur to practically zero. It also goes a long way toward reducing patients’ fear and improving their peace of mind.
But a growing body of research is indicating that these surgeries—particularly for early-stage cancers—are expensive, involve a high risk of potentially life-threatening complications, and may not actually help. A recent study published in the Journal of the American Medical Association (JAMA) found that women with early-stage breast cancer who had breast-conserving surgery (called a lumpectomy) had an 83.2 percent survival rate at 10 years compared to 82.1 percent for those who had CPM and 79.9 percent for those who had a single mastectomy.
To be fair, even though Angelina Jolie didn’t have cancer at all, the mutation of the BRCA1 gene meant she had an 87 percent risk of developing breast cancer. For women with that genetic mutation or one in the BRCA2 gene, studies have shown that the preventive double mastectomy greatly improves life expectancy. However, 90 to 95 percent of women who get breast cancer don’t have either of those genetic mutations.
With men, the situation is a little more complicated. Because our breasts are smaller, lumpectomies aren’t very effective because removing the tumor and the surrounding tissue doesn’t leave much behind. So most men opt for the complete mastectomy. But, as with women, whether to remove the healthy breast at the same time is not an easy question.
“[F]actors like fear and anxiety of developing a secondary cancer definitely play a role,” says Ahmedin Jemal, the lead author of a study on men and breast cancer recently published in the journal JAMA Surgery. Jemal found that the percentage of men opting for double mastectomy, while small, has nearly doubled over the past decade. “This is not good news,” he wrote, “because there is no evidence for the benefit of the procedure in terms of survival and there is harm associated with it.”
The bottom line: even if you have a mutated BRCA1 or 2 gene, it’s important that you have some serious discussions with your doctor and your family and carefully weigh the risks and benefits of surgery. In some cases, it’s the right thing to do. In others, it’s not. Deciding between the two isn’t a decision you should make on your own.