Choosing Radical Cancer Surgery
More Women Opt To Have Both Breasts Removed

By Rob Stein
Washington Post Staff Writer
Tuesday, February 5, 2008

When Cheryl Lawrence got a diagnosis of breast cancer, her surgeon told her she could save her breast. But Lawrence decided to have it removed anyway. And then she decided to have the healthy one removed, too.

"I didn't want to ever have to deal with this again," said Lawrence, 40, of Olympia, Wash. "I just didn't want to have to worry about it. For me, it was a matter of peace of mind."

Lawrence is not alone: The proportion of breast cancer patients who are opting for double mastectomies when far less radical surgery would suffice has increased sharply, a trend that disturbs some experts. They say too many women may be taking the drastic step in the panic that often follows a cancer diagnosis, or with the mistaken belief that more aggressive surgery will improve their survival odds.

"I think this is a very high price to be paying for a sense of peace of mind," said M. Carolina Hinestrosa of the National Breast Cancer Coalition, a D.C.-based patient advocacy group. "It's turning back the clock and kind of giving up. That, in my mind, is not progress. It is draconian."

But others argue that the trend may in some ways demonstrate women taking more control of their medical care.

"When I first heard this I was surprised. We've invested a couple of decades working on doing less surgery for breast cancer as opposed to more," said Julie Gralow, who treats breast cancer patients at the University of Washington in Seattle. "But we're empowering patients to make their own decisions as opposed to a few decades ago when we told women what to do. For women who have done their research and are making a very conscious, educated choice, it's not a choice out of fear. It's what's right for them."

Many women who choose this option, she noted, also undergo reconstructive surgery.

"Part of it may be that our plastic surgery options are better, so the thought of having a breast removed might for some women be somewhat less traumatic if they can have a reconstructed breast," Gralow said. "Some women are fairly comfortable with their body image, and this is something that is going to help them sleep better at night."

For years, women with breast cancer had one or both breasts removed in a procedure known as a radical mastectomy -- an approach that eventually was abandoned as unnecessarily disfiguring. Research showed that many women are just as likely to survive if they undergo a lumpectomy, which involves removing only the tumor and a small amount of tissue around it, often followed by chemotherapy and radiation.

But in recent years, doctors started noticing that more women were opting for double mastectomies.

"Women who had a small tumor in one breast who could have simply had a lumpectomy are having both breasts removed," said Todd M. Tuttle of the University of Minnesota.

Tuttle and his colleagues examined data from large federal health surveys and found that the rate of patients having both breasts removed rose from 1.8 percent to 4.5 percent between 1998 and 2003 -- a 150 percent increase.

Younger women, white women and women with a previous cancer diagnosis were more likely to make that choice, the researchers reported in October in the Journal of Clinical Oncology.

While the surgery reduces the risk of getting a second cancer, it does not eliminate the risk and it does not lessen the chances of dying from breast cancer. That is because second breast cancers are usually caught early and can be treated effectively.

"If women are choosing this because they think it will improve their survival and allow them to see their children graduate from high school, we may not be educating patients enough," Tuttle said.

His study did not examine the reasons for the trend, but Tuttle suggested several explanations. One might be that more women are getting tested for breast cancer genes, and those who carry the genes and then develop the disease may be opting for the most extensive surgery.

More aggressive screening with technologies such as MRI is also producing more false positives, and that can mean a biopsy.

"It starts to become overwhelming and you start to think that this is what your future is going to be -- having possible false positives and callbacks and biopsies," said Christine Teal, director of the breast cancer center at George Washington University. "That plays into patients saying, 'Do I want to be dealing with this the rest of my life?' "

Andrea Edmonds, 37, of Silver Spring decided to have her healthy breast removed a year after a single mastectomy because she couldn't shake the fear of another cancer.

"I was constantly worried about it. I lost a lot of weight," said Edmonds, whose test for one of the breast cancer genes came back inconclusive. "I didn't trust my body anymore, and wanted to remove the parts that could cause more problems down the road."

For younger women, the prospect of many years of worry may be especially daunting.

"I didn't want to be sitting around for the rest of my life waiting for the cancer to come back," said Debra Elmore-Nesheim, 43, a nurse in St. Paul, Minn., who chose a double mastectomy over a lumpectomy in 2006. "For me, the peace of mind that I was doing everything I could to take hold of my life was more important than keeping my natural breast."

Procedures for breast removal and reconstructive surgery have improved, making the situation less traumatic and producing better results, several experts said.

"Many times the decision is made because they can have a reconstruction done that may provide more symmetry, and they can get everything taken care of at one time," said Shawna Willey, a surgeon at Georgetown University.

Teal said she usually recommends the least amount of surgery necessary but can understand why some women want to do more.

"I often require that they come back and see me. They often meet with the plastic surgeons and go over the data, and in the end if it's their wish to do it and they are well informed, I'm willing to do it," she said.

The trend is understandable but disconcerting, Hinestrosa said.

"You can understand a woman facing a diagnosis of breast cancer will want to do anything she can to save her life, but the data tells us that taking that radical step may reduce the risk for another breast cancer in the opposite breast but in fact does nothing for improving your chances of survival," Hinestrosa said. "We need to do a better job in educating women and identifying what puts them at risk in the first place."

Nancy E. Davidson, a breast cancer expert at Johns Hopkins University who heads the American Society of Clinical Oncology, said she is concerned, too.

"I think we need to make sure we're counseling women appropriately," Davidson said. "I hope this reflects women getting considerable counseling and using that information to figure out what is best for them. But I think that's a question that we have to address."

Susan Love, a breast cancer expert at the University of California at Los Angeles, worries that doctors are not spending enough time explaining the options.

"When you are first diagnosed, you are in a panic and you think if you offer your breast to the gods you'll get your life back," Love said. "We think in America that more is always better. If you have the bigger, more aggressive operation, it's always better. That's our mind-set, and so many women say, 'Let's just have it off,' and the surgeon says, 'Okay.' I think it's turning back the clock."

But Lawrence, Edmonds, Elmore-Nesheim and other women said they made their decision after carefully weighing the choices.

"I wasn't considering it, but then suddenly I thought, 'I don't want to live with the fear of cancer in the other breast,' " said Terri Nimmons, 49, of Laurel, who opted for a double mastectomy after her diagnosis in June. Her sister had died of breast cancer and she worried about not being around for her 8-year-old daughter.

"I had seen the disease up close and in person, and that really stayed with me. When a mother gets breast cancer, the whole family is going to go through it with her. I'm not willing to put everyone through that again," she said.

Although the surgery was difficult, Nimmons and the other women believe they made the right decision.

"I don't think I realized how profound it would be for both my natural breasts to be gone," Nimmons said. "I'm still mourning the loss. But the diagnosis just shook my whole sense of feeling safe. This just felt like a way of feeling a little safer."