Actress Angelina Jolie’s revelation of her prophylactic double mastectomy is being considered a “game changer” by Jewish physicians, genetic counselors, and awareness advocates who counsel Jewish women sharing the gene mutation that led the actress to consider the surgery.
Jolie’s announcement has already raised awareness for the need for genetic testing and counseling, they said, even while warning that a prophylactic mastectomy may not be the answer for all women at genetic risk.
“Angelina Jolie had the guts, the strength, and the confidence to present herself as she did, and because she is such a celebrity, everyone dropped everything and listened,” said Rona Greenberg of Montclair, a breast cancer survivor and outreach coordinator for the north Jersey region of the grassroots organization Facing Our Risk of Cancer Empowered (FORCE). “A lot of people feel uncomfortable talking about hereditary cancer — they worry that they might be stigmatized, that no one else around them is at risk. That Jolie is such a celebrity might make them feel more comfortable with the decision-making process.”
At Sharsheret, the Teaneck-based organization supporting Jewish women with breast cancer and their families, the phones rang through the weekend, after Jolie announced her surgery May 14 in a New York Times op-ed.
Executive director Rochelle Shoretz said Sharsheret received 21 first-time calls from people seeking information.
Jolie’s piece in the Times was “just the beginning of a very long conversation that needs to play out over time,” said Shoretz. “What is critical is the response that people recognize the need for more information. Jolie gave a glimpse into the decision-making process, but there are myriad factors that go into each individual’s decision” regarding how to proceed.
Nonetheless, she said, “it’s a game changer when a celebrity of that magnitude shines a light on a genetic disease. It’s a game changer for discourse in families about issues that previously have not received attention, and it’s a game changer for looking into genetic history, counseling, and decision making.”
Women and men of Jewish Ashkenazi descent are at a particularly heightened risk of carrying the mutation in either of the genes BRCA1 and BRCA2, and thus face a much higher risk of developing breast and ovarian cancer. About one in 40 people of Ashkenazi descent has the mutation, compared with one in 800 people in the general population. While a woman in the general population has an 8-12 percent chance of getting breast cancer over the course of her life, someone with the BRCA mutation will have an 85 percent chance of getting breast cancer.
Consider the options
Dr. Debra Camal, a breast surgeon with a private practice in Oakhurst and medical director of the breast program for Meridian Health, said there has been “an exponential rise” in the numbers of women requesting prophylactic mastectomies in the last 10 years. But, she added, that is partly because of the rising number of women getting genetically tested.
Camal was quick to point out that prophylactic surgery is not the only option for women who test positive for the BRCA mutations.
“I support testing, but for each woman, the decision is individual and the misconception is that if you test positive, you have to have a prophylactic mastectomy,” she said. “Actually, the first thing women should do is talk to a physician or a genetic counselor where your risk of carrying the gene can be assessed. And if you have the test and test positive, a counselor or physician can help work out the next steps.”
Camal acknowledged that a mastectomy reduces the risk of developing cancer by 90 to 95 percent. “For a lot of women, that offers peace of mind,” she said.
However, “for very young women, or women who have just found the mutation, the first thing is to get on an imaging schedule, having a mammogram once a year and a breast MRI once a year, alternating January and July. Women with the mutation should start at age 25, or 10 years before the age of diagnosis of the youngest relative.”
Another option, said Camal, is the drug Tamoxifen, which blocks the effects of the hormone estrogen. “Over a five-year period, this will reduce the risk by 50 percent. At an older age, women can remove their ovaries, for a 50 percent risk reduction,” she said.
(Camal warned that taking these steps does not result in a 100 percent reduction in risk. “It doesn’t work that way,” she said.)
Finally, after considering all of these options, a woman may consider a prophylactic mastectomy.
“But unless a woman has a lot of time to think about it, I rarely recommend a mastectomy at a first BRCA meeting. It’s a big thing and it affects how a woman sees herself and how others see her. I do believe in the surgery, however. It’s about reducing risk, and with an especially aggressive cancer, it’s worthwhile.”
Greenberg underscored the need to consult a genetic counselor. “Don’t just get a blood test. It’s incredibly emotional information to receive,” she said. “Genetic counseling offers a way to get credible, accurate information from someone with the expertise, competence, knowledge, and training to help.”
Greenberg also pointed out that the gene mutation holds a heightened risk for developing other cancers, including melanoma and cancer of the prostate, pancreas, ovaries, and fallopian tubes. And she warned: “Ninety percent of the Ashkenazi Jewish population that has it does not know they are carrying the gene mutation.”