In an Op-Ed piece published in Tuesday’s New York Times, actress Angelina Jolie revealed publicly that she had undergone a prophylactic double mastectomy — removal of both breasts — in order to reduce her risk of developing cancer.
Ms. Jolie had a reason to be concerned. Genetic tests showed that she carried a mutation in a gene known as BRCA1, a change in her DNA that greatly increased the likelihood that she would develop breast or ovarian cancer sometime during her life. Cancer-causing mutations in the BRCA1 gene (or a related gene known as BRCA2) are rare, but account for a majority of familial cases of breast and ovarian cancer seen in the US.
Ms. Jolie likely inherited this mutation from her mother, who died of cancer at 56. Based on her test results, doctors estimated her lifetime risk of developing cancer at approximately 87%, probably at an early age. By contrast, the average woman in the US has a lifetime risk of 12%, with diagnosis usually coming later in life.
The decision to remove both breasts could not have been an easy one, particularly for a starlet who is famous for playing buxom femme fatales in movies like Lara Croft: Tomb Raider, Mr. & Mrs. Jones, and Salt. Ms. Jolie admits as much in her Times article. A prophylactic mastectomy doesn’t completely eliminate her risk of breast cancer, only reduces it by about 10-fold.
She is also at increased risk of developing ovarian cancer, but elected not to have her ovaries removed. A prophylactic oophorectomy, as that procedure is known, is an invasive procedure with long-lasting physiological effects, including early menopause, cardiovascular disease, osteoporosis, and loss of sexual function.
With recent advances in reconstructive surgery, there was no need for Ms. Jolie to go public. She wouldn’t have been the only Hollywood star to get breast implants, just one of the few that had a medical reason for doing so. Barring release of her medical records, a serious breech of privacy, no one would have been the wiser.
So why speak out? According to the actress, she wrote about her experience so that other women could benefit. Specifically, so women with a familial history of cancer could get tested for mutations in the BRCA1 and BRCA2 genes and, if necessary, to “take action.”
Having a spokeswoman like Angelina Jolie increase public awareness of breast cancer is good. It is a laudable goal, but it also one that worries me. Women who look to Angelina as a role model might rush to be tested for cancer-causing genes. However, the results of genetic testing have profound consequences — physically, psychologically and for future insurance coverage. In addition, the tests in question are very expensive. A single test costs approximately $3,000, and may not be covered by existing health insurance plans. Many women simply cannot afford to do what Angelina did.
These exorbitant testing costs are due to the fact that a Utah-based company called Myriad Genetics has patented both the BRCA1 and BRCA2 genes. Myriad currently holds a monopoly on testing for breast and ovarian cancer-causing mutations. The legality of this monopoly had been questioned, most notably in a US Supreme Court case challenging a private company’s right to patent human genes. But until the Court’s ruling in October, the company has every legal right to charge what it believes the market will bear.
Given this, only women with a clear familial history breast or ovarian cancer should be tested. But figuring who has such a history is not an easy task. As many as one in eight women in the US will develop breast cancer at some point in their lives, making it likely that most people will have a sister, mother, aunt or grandmother with a diagnosis. People can have as many as two, three or even four female relatives with cancer. But most of these cases will not be associated with mutations in BRCA genes. It takes a trained genetic counselor or skilled physician, using a detailed family tree, to know for sure whether or not a woman is a potential carrier of a mutant gene.
Moreover, for those unlucky few who do carry a mutant copy of BRCA1 or BRCA2, a prophylactic mastectomy or oophorectomy may not be the answer. Ms. Jolie made a carefully considered and informed decision, in consultation with a highly trained team of doctors, to undergo this radical procedure. But there are other less effective but less expensive and less invasive options, including tamoxifen or regular monitoring, that may be the better choice for many woman (particularly those that lack the savvy and resources of Angelina). I’d hate to think that they rushed to have their breasts removed simply because their favorite starlet had done the same.
None of these concerns I voice is meant to take away from what Angelina has done. Speaking publicly about her decision is a courageous thing to do. But the take-home message for women is far more nuanced than get tested and get treated.
[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 14, 2013. It is also available on the WAMC website.]