Now that Angelina Jolie has gone public with her decision to have both breasts removed because of her high risk of breast cancer, can doctors expect a stampede of women into their offices demanding the same procedure?
Yes and no.
The number of patients opting for preventive double mastectomies has increased nationally -- in Pennsylvania they've more than quadrupled in nearly 10 years -- and more celebrities are speaking out about their surgeries: Ms. Jolie, 37, an international movie star and human rights activist; actress Christina Applegate; and, back in 1994, WPXI-TV news anchor Peggy Finnegan.
Gretchen Ahrendt, a breast cancer surgeon at Magee-Womens Hospital of UPMC, frequently finds herself in a tug of war with patients insisting on the procedure, even if other, less invasive options are available.
"I just got done seeing one patient who wanted a double mastectomy, even though there was no reason on God's green Earth she should have one. I just couldn't talk her out of it. At one point I thought she was going to fire me," said Dr. Ahrendt, co-director of the Comprehensive Breast Cancer Program at Magee.
Thomas Julian, director of surgical breast oncology at West Penn Allegheny Health System, recounts similar conversations with patients. "It becomes a difficult situation. There are always a group of women who say, 'I don't care. I never want to go through another biopsy. I want the mastectomies.' "
He encourages such patients to try less invasive options first, such as increased screening and closer monitoring.
When Ms. Jolie, who watched her own mother die of breast cancer at 56, had genetic testing, she found she had the BRCA1 gene with a mutation that meant an 87 percent chance she would get the disease. She revealed in an op-ed piece in Tuesday's New York Times that she had had preventive mastectomies and reconstructive surgery.
A relatively small number of women have the kind of genetic mutation that Ms. Jolie has -- the BRCA1 gene, which, along with the BRCA2 gene, causes between 5 to 10 percent of all breast cancers and 10 to 15 percent of ovarian cancers in the United States.
Other ethnic and racial groups also can have the defective gene -- to what extent is unknown -- but 1 in 40 Jewish women, especially those of Ashkenazi descent, carry it, 10 times the number of the general population.
While 90 percent of breast cancers don't involve genetic abnormalities, "for women in this group, it's an epidemic," said Nancy Kaufman, CEO of the National Council of Jewish Women, whose first cousin underwent a preventive double mastectomy two weeks ago, and whose cousin also died of breast cancer.
The NCJW -- whose local chapter brought Race for the Cure to Pittsburgh 21 years ago -- has been out front on the genetic testing issue since the BRCA1 gene was linked to breast cancer by researchers in 1995, she said.
And today, Rochelle Shoretz, a 40-year-old New Jersey breast cancer survivor, runs a national peer support program, Sharsheret -- Hebrew for chain -- that seeks to provide crucial information for Jewish women at risk for breast and ovarian cancer.
"Angelina Jolie was lucky," Ms. Shoretz said. "She knew her mom had cancer, but what about Jewish families without extensive histories? We have a real opportunity to give these women the information they need that will help their children make decisions, too. Will more women who read Angelina Jolie's piece end up at the doctor's office? I don't know, but this is about getting the conversation going."
Family history of breast cancer doesn't always mean there's a genetic mutation, as Marina Posvar, 58, of Shadyside learned. In her late 30s, she was diagnosed with breast cancer and had the double mastectomy. Her family history, on her mother's side, had numerous cases of cancer, but when the genetic test became available in the late 1990s, she discovered she didn't carry the defective gene. Still, she and other family members are participating in an ongoing study to track down other genes that may be linked to breast cancer.
One company, Utah-based Myriad Genetics, owns the patent on the current BRCA genetic tests, and that has prompted a lawsuit that has gone all the way to the U.S. Supreme Court, which is expected to rule on the case in June.
Plaintiffs claim Myriad is blocking efforts by other researchers to market alternative tests for the defective genes, although Ron Rogers, a spokesman for the company, said it has never blocked research -- only any attempt to market tests that detect the presence of those genes that the company has patented.
He also rejected the argument that Myriad's test -- whose "list" price is $4,000 -- is too expensive, noting that most insurers cover genetic testing of women with strong family histories of breast cancer or who have other risk factors. Those without insurance, he said, are eligible for free or reduced price genetic testing.
Breast cancer experts at Yale University, who developed tests for the BRCA genes and are among the plaintiffs, say women need to understand their personal risk for breast cancer.
"These are their genes, and the technology is out there which can look for mutations in those genes. But the company that owns the patent is opposed to any kind of testing on these genes, and personally, I have a real problem with that," said Anees Chagpar, who heads Yale's breast cancer center.
Even as that battle goes on, one breast cancer survivor looks back to 1994, when genetic testing for BRCA mutations wasn't available. But she could nonetheless read the warning signs in her own family history.
Peggy Finnegan and her two sisters were diagnosed with breast cancer between 1993 and 1995. It was a common occurrence in her family, among male and female relatives alike. Even though she had a very early case that could have been treated with a lumpectomy, she opted at age 34 for a bilateral mastectomy and reconstructive surgery.
"I have never, ever regretted having that surgery," she said, saying it took the fear and anxiety she felt about receiving another breast cancer diagnosis. She has since learned that she carries the BRCA2 gene, and said she was impressed that Ms. Jolie shared her story about her surgeries in such a public way.
"I think she was very courageous to do it and to be so public about it," Ms. Finnegan said. "And I do think it's going to help a lot of people, because I do think that so many people still think of it as a disfiguring surgery, but it really isn't."
Mackenzie Carpenter: firstname.lastname@example.org; 412 263 1949. On Twitter @MackenziePG. Kaitlynn Riely contributed. First Published May 15, 2013 4:00 AM