In an effort to promote awareness of breast cancer prevention methods, 37-year-old Hollywood star Angelina Jolie published an op-ed in the New York Times today revealing that she had undergone a preventive double mastectomy.
Jolie, whose mother died from cancer at the age of 56, discovered through genetic testing that she had a harmful mutation of the BRCA1 gene. She went through three months of procedures, including reconstructive surgeries, to significantly reduce her own risk.
BRCA1 and BRCA2, which stand for breast cancer susceptibility genes 1 and 2, are human genes known as tumor suppressors. While mutations of these genes can be harmless or even beneficial, harmful mutations raise a woman’s risk of developing breast cancer from 12% (the general population’s risk) to 60%. They also may increase her risk of developing such cancers as cervical, uterine, pancreatic, colon and melanoma.
Blood tests can determine whether or not a woman has one of these mutated genes. Costs can vary, but if you have a new insurance plan that began on or after Aug. 1, 2012, the test is covered under the Patient Protection and Affordable Care Act when recommended by a provider. Expect to wait several weeks or more to receive your results. Counseling is also covered if the results come back positive.
Susan G. Komen for the Cure recommends testing for people with:
It’s unlikely that you carry one of the BRCA mutations if you or an immediate family member is the only person in your family with breast cancer and if the breast cancers in your family all occurred at older ages.
To find a healthcare professional trained in genetics, visit NCI’s Cancer Genetics Services’ directory.
Many of the stories covering Jolie’s procedure mention the fact that these preventive mastectomies are on the rise and aren’t recommended for most women. While this is true, Jolie isn’t “most women.” And we’re not talking about the fact that she’s a superstar and married to Brad Pitt. Her faulty BRCA1 gene puts her at high risk for breast cancer, and preventive mastectomies may reduce the chance of developing the disease in moderate- to high-risk women by about 90%.
An increasing number of women are opting for preventive double mastectomies or contralateral preventive mastectomies — removing the healthy breast in addition to the cancerous breast — with CPM rates in the United States more than doubling between 1998 and 2003.
The National Comprehensive Cancer Network guidelines recommend CPMs on a case-by-case basis for high-risk women, such as those who carry the BRCA1 or BRCA2 mutation, or those with Li-Fraumeni syndrome. Among those who have had breast cancer in one breast and had the lump or the whole breast removed, only 3% to 9% will develop the disease in the other breast. Because the risk is so low, the NCCN doesn’t recommend removing a perfectly healthy breast with the cancerous one.
Another Hollywood star, Christina Applegate, chose to remove both breasts after being diagnosed with cancer in her left breast at the age of 36 — but she had also tested positive for the BRCA mutation and chose the double mastectomy because of her increased risk.
Preventive mastectomies, like all surgeries, pose a risk of infection and bleeding, and they can also come with psychological side effects. Many women find it difficult to cope with the change in body shape, feel that they’ve lost a part of their sexual identity and/or fear their significant others or future partners will find them less attractive.
Jolie addressed this in her editorial, stating, “I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.” She also noted how important it was to have supportive friends and family throughout the process.
Many women, including Jolie, choose to have breast reconstruction to restore breast shape after mastectomies. Thanks to the 1998 Women’s Health and Cancer Rights Act, most group insurance plans that cover mastectomies are also required to cover breast reconstruction — but there are currently no federal laws requiring insurance providers to cover preventive mastectomies. Coverage varies from state to state. You can learn more about your state’s laws regarding coverage of the procedure through the State Cancer Legislative Database Program.
It’s important to note that while double mastectomies can drastically reduce breast cancer risk in women with the BRCA mutation, it’s not a guarantee. Not all at-risk tissue can be removed by these procedures, so some women do develop the disease even after preventive surgery.
Other options for those with the mutation include surveillance, which can’t prevent cancer but aims to find it early while it may still be treatable; chemoprevention, which some studies show can reduce the risk of developing breast cancer by about 50% in high-risk women; and risk avoidance, which means making changes to one’s lifestyle and habits, such as limiting the consumption of alcohol, eating a low-fat diet, exercising regularly and avoiding menopausal hormone use.