The word "brave" has been used many times in the week since Angelina Jolie disclosed she underwent a preventive mastectomy, and it was fearless declaration. But the word that first pops into to my mind about the actress's decision to go public is "generous."
By alerting the world to her decision, Jolie has given women everywhere a gift: the knowledge that with proper genetic counseling, women can better assess their own breast and ovarian cancer risks.Jolie's decision highlights the value of genetic counseling and making informed decisions. In my own practice, I have already seen the positive effect of this.
Jolie disclosed that her mother had breast cancer and died of ovarian cancer, and her maternal grandmother also had ovarian cancer – strong evidence of an inherited genetic risk. Following her mother's death, the actress underwent genetic testing and found she carried the BRCA gene mutation that increases a woman's risk of breast and ovarian cancer.
Women with strong family histories of breast or ovarian cancers who declined genetic testing years ago, have been calling my office in the days following Jolie's announcement. They are now ready to explore their family histories. Ready to take fate into their own hands.
Only about 5 percent of breast cancer and 10-12 percent of ovarian cancer is attributed to the BRCA genetic mutations, but those who do carry a mutation have at least a 65 percent risk of developing cancer, as opposed to a 12 percent risk for most women. Jolie disclosed that her own risk was assessed at 87 percent. The risk of ovarian cancer for BRCA gene carriers can be as much as 40 times that of an average-risk woman.
Genetic testing is not for everyone. Some of the tests can be as expensive as $4,000. So it is important to seek the advice of a trained genetic counselor before deciding whether to undergo testing.
A genetic counselor would encourage a consultation for people with a personal or family history of cancer, a family history of breast cancer under the age of 50, ovarian cancer at any age or male breast cancer. Keep in mind, when assessing your own family history, 50 percent of the time the BRCA genetic mutation comes from the father's side of the family – an aunt or a paternal grandmother.
It is important to note that not everyone can accurately conduct genetic testing. At times physicians will think, "We'll help out the patient and we'll just do the test here." Unfortunately, genetic testing is often well outside a physician's expertise, leading some to order the wrong tests or misinterpret the data. At least one patient I worked with underwent a similar preventative mastectomy as Jolie's only to discover later that her physician misinterpreted her risk and the surgery was unnecessary.
At Hoag Hospital, we started our Hereditary Cancer Program 15 years ago with 40 new patients a year. Now, we see more than 400 new patients a year. Our genetic counselors have identified a group of 250 positive BRCA patients, and nearly 90 percent of our patients are seen for breast and ovarian cancer risks.
I expect that in the coming months the number of people calling our office will continue to increase – and I welcome this. As a genetic counselor, I know how vital it is for women to receive the best information possible about their health.
So, again, I believe it was very generous of Angelina Jolie to make her disclosure. Who better to shine a bright light on the value of genetic testing than one of the world's biggest stars?
- Jeanne Homer is a licensed certified genetic counselor and supervisor of genetic counseling at Hoag Hospital.
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