Star's preventive surgery sparks breast cancer debate

Angelina Jolie's announcement Tuesday that a genetic predisposition to breast and ovarian cancer led her to undergo a preventive double mastectomy has raised both awareness about the procedure and concerns among physicians and other experts.

The actress revealed that she carries a "faulty" gene, BRCA1, linked to an increased likelihood of breast cancer and ovarian cancer. "Once I knew that this was my reality," she wrote in a New York Times op-ed column, "I decided to be proactive and to minimize the risk as much I could."


Jolie follows other high-profile women who have taken this pre-emptive step. But none have the celebrity wattage of the 37-year-old actress, whose mother, producer Marcheline Bertrand, died of ovarian cancer in 2007 at age 56.

"It's pretty significant when an international superstar makes a decision to be public about this," said Lindsay Avner, 30, a North Side resident who had the same surgery seven years ago. "To have the national stage for this platform is just incredible."


But it's also a cause for worry, some clinicians say. Many women without the genetic mutation have been choosing preventive, or prophylactic, double mastectomy as the first line of defense when it's unnecessary, experts said. The headlines made by Jolie may push the pendulum even farther in that direction.

"I hope the message will be if you think you are at risk, get the appropriate genetic counseling," said Dr. Todd Tuttle, chief of surgical oncology at the University of Minnesota, who has published several studies on those who opt for the more aggressive treatment. "I certainly hope that women don't think, 'My cousin had breast cancer, so I should get a prophylactic double mastectomy, too.'"

About 12 percent of all women will develop breast cancer sometime in their lives, according to the National Cancer Institute. But for women with the gene mutation, the risk is closer to 60 to 70 percent, even though Jolie's column cited her risk as 87 percent, said Dr. Peter Hulick, medical director of the Center for Medical Genetics at NorthShore University HealthSystem. He said that Jolie's number likely can be attributed to studies from the mid-1990s that have since been revised.

However, Hulick did not contradict the actress' assertion that she reduced her breast cancer risk by about 90 percent. The odds would shrink even more if the ovaries are removed before menopause, further reducing estrogen exposure to any remaining breast tissue, he said. The double mastectomy reduces the risk of ovarian cancer as well.


Only 3 to 5 percent of women diagnosed with breast cancer have the BRCA abnormalities. With ovarian cancer, it accounts for about 10 to 15 percent of cases, according to the Centers for Disease Control and Prevention.

A simple blood test in the doctor's office can detect the inherited gene mutation, but the screening is not a routine part of examinations and the $3,500 tab may or may not be covered by insurance. A negative test does not mean a woman cannot get breast cancer, Hulick said.

There is no standard criteria to recommend someone for gene testing, according to the National Cancer Institute. But candidates would include women with two siblings, parents or grandparents who were diagnosed with breast cancer or ovarian cancer when younger than 50, the institute said. Jews of Eastern European and Central European descent are at a higher risk for the gene mutation as well.

"That's why it's important to have a conversation about family history, including father's side of the family, as well as update their history with their primary care physician annually," Hulick said.

But experts such as the University of Minnesota's Tuttle and Dr. Seema Khan, a professor of surgery at the Feinberg School Medicine at Northwestern University, want patients to have a better understanding of the risks and benefits of a preventive mastectomy.

In March, the Tribune reported on the growing body of literature that shows women vastly overestimate their risk of breast cancer, fueled by a barrage of health campaigns. Some experts said more and more women with cancer in one breast or with a relative diagnosed with breast cancer were unnecessarily opting for a double mastectomy.

While the surgery is a viable path for those with a genetic susceptibility, the experts expressed concern that some women won't understand the distinction.

"For those who have the mutation, the equation is different ... and this will give them the greatest risk reduction," Khan said. "But I worry that many are not availing themselves of genetic testing ... or they're ignoring it and still getting the surgery."


Not long ago people didn't talk about such personal cancers at all. In recent years, Sharon Osbourne discussed her decision to have a preventive double mastectomy. Other celebrities such as Wanda Sykes, Christina Applegate and Giuliana Rancic talked publicly about their double mastectomies after being diagnosed with breast cancer.

The disclosure by a sex symbol such as Jolie — whose full lips sent record numbers of women to their dermatologists for collagen injections — cannot be overstated, medical professionals said.

"For someone like Angelina Jolie, who is such a symbol of femininity, (it) can have quite an impact," said Janine Gauthier, a cancer psychologist at Rush University Medical Center who helps patients navigate the emotional aspects of diagnosis and treatment.

"A lot has to do with their relationships with their breasts," Gauthier said. "For some patients, their breasts are what makes them female; for others, it's not a big part of their identity."

But the most significant message sent by Jolie is one of empowerment, said psychologists and Avner, an activist who started a foundation called Bright Pink for women trying to decide on the right course of action.

"Our grandmothers would have given anything to have these choices," said Avner, whose mother and grandmother had breast cancer. "We're lucky to be living in a time when women have information … and choices."