One year ago today, Angelina Jolie bravely shared her deeply personal connection to breast cancer, including losing her mother, discovering she is a carrier of the BRCA1 mutation, and – most poignantly – her decision to undergo a bilateral mastectomy to reduce her risk of developing breast cancer. Her op-ed in The New York Times made women around the country, and the world, take pause to think about their own family history and contemplate if they, too, may be at risk. It prompted conversations about what could be done to deal with cancer risk and help decrease fear.
Star Power Brings Acceptance
Jolie’s celebrity status normalized difficult and stigmatized medical decisions that may be considered by women who are at increased risk of developing breast cancer either due to family history or because of a genetic mutation. The decision to pursue a risk-reduction bilateral mastectomy is often wrought with concerns over body image, sexuality, fear of rejection from a spouse or significant other, and fear of judgment from others.
Then, a woman known for her body and sexuality made the decision to pursue this surgery to reduce her cancer risks and share it publically. This led to a pop culture shift toward acceptance of decisions and medical options for women. Previously women felt pressure not to do the surgery as others felt it was too aggressive or mutilated the body. Now, women report peer pressure to do the same surgery to “stay safe.” Some feel more comfortable discussing the surgical option with friends and family, while for others extra surveillance, such as more frequent mammograms and breast MRI, are the preferred option.
BRCA Testing is Not for Everyone
An unintended consequence of Jolie’s op-ed was the notion that the breast cancer gene test was meant for everyone to determine her or his (yes, men too) chance of developing breast cancer. Realistically, there are several factors that should be considered prior to taking the BRCA1/2 gene test, including:
Being diagnosed at a young age (less than 45 years old)
Being diagnosed at less than 50 years old, with a family history of one or more relatives with breast cancer at any age
Being diagnosed at less than 50 years old with an unknown or limited family history
Having three or more people with breast and/or ovarian cancer on the same side of the family, including men
Having a diagnosis of ovarian cancer or fallopian tube cancer
At $4000 per test, this is not a cost-effective option for the general public, as the result provides quite limited information.
How to Assess Your Risk
As a genetic counselor specializing in cancer genetics, I work with patients to help them understand their individual chance of developing breast cancer based on personal and family characteristics to determine the chance of a useful test result. If testing is appropriate, I counsel patients on how to use the results to protect their health.
As a genetic counselor specializing in cancer genetics, I work with patients to help them understand their individual chance of developing breast cancer based on personal and family characteristics to determine the chance of a useful test result.
Jolie’s op-ed empowered women to ask important questions about breast cancer risk. While genetic tests are available, they are not necessarily useful for everyone. A genetic counselor can be a valuable resource to explain complicated information, cancer risks, and ensure the appropriate genetic test is performed. You can learn more about your personal risk for breast and ovarian cancer today by using the free NSGC-approved Assess Your Risk Tool developed by Bright Pink.
Joy Larsen Haidle, MS, CGC, is president-elect of the National Society of Genetic Counselors and a genetic counselor at the Humphrey Cancer Center in Minneapolis.