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More women opting for preventive mastectomy - but should they be?

Actress Angelina Jolie made headlines Tuesday when she announced in a New York Times op-ed that she had underwent a double mastectomy after finding out she had an 87 percent chance of getting breast cancer due to the BRCA1 gene. NBC's Dr. Nancy Snyderman reports.

Angelina Jolie's surprising announcement that she'd had both breasts removed to reduce her risk of getting cancer has brought renewed attention to the controversial procedure.

Rates of women who are opting for preventive mastectomies have increased by an estimated 50 percent in recent years, experts say. And surveys show they are happy with the decision.

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Undated photo of Angelina Jolie, her mother, Marcheline Bertrand, and her brother, James. Bertrand died of cancer in 2007. She was 56.

But many doctors are puzzled because the operation doesn't carry a 100 percent guarantee, it's major surgery -- and women have other options, from a once-a-day pill to careful monitoring. Women can take tamoxifen or one of several newer drugs called aromatase inhibitors and reduce their risk by as much as 50 percent.

For Jolie, the chance to prevent cancer was worth losing her breasts, she wrote in the New York Times

Like many other women having the procedure, Jolie, who is 37 and a mother of six, says she did not want to live in dread of the cancer that killed her mother at age 56. “I decided to be proactive and to minimize the risk as much I could,” she wrote.

Since genetic tests for breast cancer risks have become available, the numbers of women choosing to be tested and then to have their breasts removed has shot up, says Dr. Todd Tuttle, chief of surgical oncology at the University of Minnesota.

Jolie said she had a mutation of the BRCA1 gene, which raises the risk of both breast and ovarian cancer. “My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman,” she wrote. She says she also plans to have her ovaries removed at some point.

In Jolie's case, her decision was "absolutely indicated," said Tuttle. At 37, Jolie is young to worry about breast cancer. But studies also show that the younger a woman is when she develops breast cancer, the more aggressive the disease is.

Other genes can raise or lower the risk that BRCA1 and BRCA2 mutations confer. And these mutations are rare. The U.S. Preventive Services Task Force recommends that only women with a strong family history even think about getting a BRCA genetic test –which is only 2 percent of U.S. women.

But why are so many women opting for surgery when survival rates for breast cancer are 93 percent if it’s caught at the earliest stages and 88 percent at stage 1?

“I have postulated that one of the downsides of breast cancer awareness is that there is a situation of hyperawareness. Women in the United States are just assuming they are going to get breast cancer,” Tuttle says. The actual rate is about 12 percent. About 1 in 8 U.S. women will develop breast cancer, and while 230,000 women were diagnosed with breast cancer last year, just under 40,000 died of it.

Dr. Sandra Swain, president of the American Society of Clinical Oncology, agrees that women shouldn't just assume they are at high risk. But she doesn't think there's any such thing as too much awareness.

"To me, you never can be too aware," says Swain, medical director of the Washington Cancer Institute at MedStar Washington Hospital Center. "I think people speaking out like Angelina Jolie are very good. She is very thoughtful about it." Jolie got genetic counseling and got an assessment of her own personal risk. "That's a good model," Swain said.

It’s hard to determine the precise number of women who are opting to have surgery for a medical condition they don't yet have. Private insurance companies have the best information, and there’s not an easy way to get it and compile a database.

Tuttle’s done a lot of research looking at how many women chose to have both breasts removed when cancer was found in one breast. Although the risk of developing cancer in the healthy breast is fairly low, many women choose to have both breasts removed when a tumor develops in one.

One study showed that women aged 55 and younger with a family history of breast cancer in both breasts – a high-risk group – had about a 16 percent risk of developing cancer in the second breast over the next 10 years. Older women would have an even lower risk. Yet the rates of prophylactic mastectomies among these women doubled between 1998 and 2005.

“It is pretty clear that the use of double mastectomy for women with cancer in one breast has exploded,” Tuttle told NBC News.

Another way to look at rates is to study women with a form of pre-cancer called lobular carcinoma in situ, or LCIS for short. LCIS does not always progress to cancer, but some women choose to have their breasts removed after a diagnosis, Tuttle says.

“Rates of prophylactic mastectomy for women with LCIS increased by 50 percent since the year 2000,” Tuttle said. He presented a study to the American Society of Breast Surgeons last week showing rates of women have preventive mastectomies after LCIS went from 12 percent in 2000 to 18 percent in 2009.

Jolie’s decision resonated with women like Lizzie Stark, 31, of Edison, N.J., who had a preventive double mastectomy two years ago after learning she had the BRCA1 gene. Her immediate response was empathy for the movie star – “This is a terrible decision to have to make” – and gratitude that Jolie chose to go public.

“I think it’ll make it easier, the more women who come out and talk about it,” said Stark.

Private insurers usually pay for both the removal and the reconstruction, including implants, if a doctor indicates the need. And the results are good if done by a good surgeon, studies show. Women usually feel good about their choice, also – surveys of women who have had double mastectomies show little regret.

But women may not realize just how serious the surgical procedure is, Tuttle says.

“I wonder if one of the reasons driving this trend is women underestimate the extent of this operation,” he said. “Prophylactic mastectomy with immediate reconstruction is a big operation. It can be five to six hours,” Tuttle says. “There can be complications and re-operations.”

And recovery can take a “good month”,  he added.  

“Prophylactic mastectomy is permanent and irreversible,” the National Cancer Institute cautions. “This surgery causes significant loss of sensation in the breast, which can have an impact on sexuality.”

Stark, who also had nipple-sparing reconstructive surgery, said she appreciated that Jolie made a point of saying that the surgery didn’t diminish her sexuality.

“I did feel like I lost my femininity,” Stark said. “Because it is a part of your body associated with femininity. I started wearing girlier clothes than I had before. I started wearing more makeup and plucking my eyebrows. But you don’t have to lose your femininity.”

Jolie explains the motivation behind her decision: control. "Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of," she writes.

In a surprising revelation, the actress wrote in the New York Times that she underwent a double mastectomy after learning she had a high likelihood of being diagnosed with breast cancer. NBC's Dr. Nancy Snyderman reports.

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