Angelina Jolie’s prophylactic mastectomy a difficult decision

Angelina Jolie revealed yesterday in a New York Times op-ed article that she underwent a double mastectomy so she wouldn’t get breast cancer. Choosing that operation must have been an extraordinarily difficult decision. Going public with it must have been equally difficult. Telling her story may help other women learn more about the genes that underlie some—but not all—breast cancers and the tests available for them. For some women, the benefits of such a serious preventive step outweigh the risks, for personal and medical reasons. But this may not be true for every woman.

Jolie underwent what’s called a prophylactic double mastectomy. That means she had both of her breasts removed even though she hadn’t been diagnosed with breast cancer. She said she did this because she carries a gene, called BRCA1, that significantly increases the odds of developing breast or ovarian cancer.

A related gene, BRCA2, also greatly boosts the chances of developing breast cancer. (Men with these mutations also have an increased risk of breast cancer.) You can learn more about BRCA1 and BRAC2 at the National Cancer Institute’s website.

In the general population, about 12 out of 100 women (12%) will develop breast cancer at some point during their lives. Among women who have inherited a harmful mutation in BRCA1 or BRCA2, 60 out of 100 (60%) will develop breast cancer. Women who have at least two close relatives—a mother, sister, or daughter—who have had breast or ovarian cancer are also at much higher risk. (Jolie’s mother died of ovarian cancer at age 56.) These women are good candidates for prophylactic mastectomy.

Some women, like Jolie, undergo prophylactic mastectomy before they have ever been diagnosed with breast cancer. Others have both breasts removed when a tumor is found in one breast.

The use of prophylactic mastectomy doubled between 1998 and 2005, according to a report in the journal Current Oncology Reports, and is likely still rising. One reason is more widespread use of genetic tests for BRCA1 and BRCA2.

It’s also possible that high-visibility celebrities who undergo prophylactic mastectomy because they are at high risk for developing breast cancer, like Jolie and Sharon Osbourne, and those like Christina Applegate, who had a double mastectomy after a tumor was found in one breast, are making women more aware of this option.

Get good information

If you or a loved one has been diagnosed with breast cancer, it’s important to take some time to weigh your options. A University of Michigan study showed that nearly three-quarters of women who opted to have prophylactic mastectomy were actually at very low risk of developing cancer in the healthy breast. According to the researchers, those women didn’t have a good medical reason for doing it and were “not expected to benefit in terms of disease-free survival.”

That’s not to say their decisions were wrong. They made the best personal choices for their physical and mental health. About 90% of the women who had a preventive mastectomy said they were “very worried” about facing cancer again, and the prophylactic mastectomy eased this fear. A new study from the University of Pittsburgh indicates that most women who undergo prophylactic mastectomy were glad they did it and would recommend to other women in their situation.

But the University of Michigan research suggests that women diagnosed with breast cancer be given more and better information about their chances of developing cancer in the other breast and about the risks and benefits of prophylactic mastectomy. All surgery carries the risk for complications and the recovery for mastectomy—and reconstructive surgery should a woman opt for that—take a toll, albeit usually a temporary one.

Taking time to make the decision, and talking it over with a trusted and knowledgeable expert, is an important part of the decision-making process. Having as much information as possible before choosing prophylactic mastectomy is as empowering as making the decision itself.