Double Mastectomy: Think Twice. Reflections on the media firestorm unleashed by Angelina Jolie

Published on
May 14, 2013

You can’t get much more high profile than Angelina Jolie. If she speaks out about an issue, the world listens. But what will they glean from her May 14, 2013 op ed piece in the New York Times about her decision to undergo a double mastectomy to prevent breast cancer?

A viable treatment option for women who already have breast cancer, mastectomy has become a controversial procedure for women who want to reduce their chances of getting it in the first place.

Jolie explained to readers why genes increased her risk of breast cancer.

I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman. …

Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy.

Many of the 1200 comments, and counting, posted to the NYT website expressed gratitude -- with words like “hero” and “brave.” But some consider her approach to raising breast cancer awareness extreme.

As reported today more women are opting to have their breasts removed even before cancer strikes, which has “puzzled” some doctors “because the operation doesn't carry a 100 percent guarantee, it's major surgery -- and women have other options, from a once-a-day pill to careful monitoring. Women can take tamoxifen or one of several newer drugs called aromatase inhibitors and reduce their risk by as much as 50 percent.” also noted the paucity of data on the subject.

It’s hard to determine the precise number of women who are opting to have surgery for a medical condition they don't yet have. Private insurance companies have the best information, and there’s not an easy way to get it and compile a database.

Others who commented on the New York Times website explained their own experience with preventive mastectomy, like a woman from Montreal who had her breasts removed at age 23:

All I can say is a mastectomy is not a walk in the park: I still have residual neuropathic pain 5 years later and after 5 surgeries my breasts are still incomplete because my body rejects implants.

Some commenters focused on the cost element. Here’s what a reader from St. Paul, Minn. wrote:

The only thing this piece leaves out is the monetary cost of the procedure, and whether or not it truly is an option for the average woman, with or without employer-associated health coverage. This is a beginning of a worthwhile conversation, but I really wish she'd used this platform to highlight that there's not just social stigma and fear to battle, but real economic realities, from paying for the procedure (it's not just third-world women who may not be able to afford the $3000 test) to taking time off work for recovery.

To be fair, Jolie acknowledged that many women in the U.S. can’t afford the genetic test to determine if they are at increased breast cancer risk. She wrote that it should be “a priority to ensure that more women can access gene testing and lifesaving preventive treatment.”

The flipside to the cost issue: How relevant is this test to most American women? Jolie herself wrote, “Only a fraction of breast cancers result from an inherited gene mutation.”

The Washington Post’s Sarah Kliff reported today on women accessing the BRCA1 and BRCA2 test that indicates an increased breast cancer risk:

The big question in medical research, though, is whether most women should. Figuring out which women should have the expensive screening for a relatively rare genetic mutation is a vexing task. Researchers have no bright line between the portion of the population that is and is not at risk.

Researchers estimate that 0.11 to 0.12 percent of women in the general population carry either of the BRCA mutations.

As with most things medical, even when the odds are low, they still matter to the few people who end up getting a condition. Kliff reports that access to the genetic breast cancer test will change with the Affordable Care Act. Insurers will be mandated to cover it, but only in “appropriate” circumstances.

Genetic counseling and BRCA testing, if appropriate, must be made available as a preventive service without cost-sharing,” the Department of Labor wrote in a March 9 document that clarified some of the health law’s preventive benefits.

That “if appropriate” bit above is important. The United States Preventive Services Task Force and other groups do not think that the BRCA screening is appropriate for women without a history of breast cancer. …

BRCA testing is recommended in a more limited context, for women with “increased family risk” history, such as multiple cases of breast cancer in the family. The task force recommends that “primary care providers should ask about specific types of cancer, which family members were affected, and the age and sex of affected family members.

ABC News’ Dr. Jennifer Ashton's article about what to consider before undergoing genetic testing for breast cancer risk includes information about the alternatives to a preventive mastectomy. Ashton concludes:

While the information presented here represents the medical tip of the iceberg, the hope is that it can begin the process of informing, educating and empowering both women and men about this kind of genetic mutation and cancer risk.

Jolie opened up a discussion about an important topic based on her personal decision. Hopefully, those who read her piece realize that such a major decision is far more complicated than a Hollywood movie with a fairytale ending.

Image by Gage Skidmore via Flickr