Fear off their chests

When Cheryl Lawrence was diagnosed with breast cancer, her surgeon told her she could save her breast.

But Lawrence decided to have it removed. And then she decided to have the healthy one removed, too.

“I didn't want to have to deal with this again,'' said Lawrence, 40, of Olympia, Washington. “For me, it was a matter of peace of mind.''

Lawrence is not alone: The proportion of breast cancer patients opting for double mastectomies when far less radical surgery would suffice has increased sharply, a trend that disturbs 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 peace of mind,'' said M. Carolina Hinestrosa of the National Breast Cancer Coalition, a Washington DC-based patient advocacy group. “It's kind of giving up. It is draconian.''

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

Conscious choice

Julie Gralow, who treats breast cancer patients at the University of Washington in Seattle, says: “For women who have done their research and are making a conscious choice, it's not a choice out of fear. It's what is right for them.''

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

“Some women are fairly comfortable with their body image and this is something that is going to help them sleep better at night,'' Gralow said.

For years, women with breast cancer had one or both breasts removed in a procedure known as radical mastectomy — an approach eventually 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 tumour and the tissue around it, often followed by chemotherapy and radiation.

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

Todd M. Tuttle of the University of Minnesota 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 per cent to 4.5 per cent between 1998 and 2003 — a 150 per cent increase.

Younger women, white women and women with a previous cancer diagnosis were more likely to make that choice, the researchers reported 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 chances of 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.

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

Less traumatic

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

“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.

Christine Teal, director of the Breast Cancer Centre at George Washington University, 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 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.

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.

“We in America think that more is always better. If you have the bigger, more aggressive operation, it's always better. That's our mind-set.

"So many women say, ‘Let's just have it off,' and the surgeon says, ‘Okay.' I think it's turning back the clock.''

Terri Nimmons, 49, of Laurel, Madison, opted for a double mastectomy when she was diagnosed with cancer in June.“I wasn't considering it but then I thought: ‘I don't want to live with the fear of cancer in the other breast,''' she said.

“I don't think I realised 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 safer.''