Questions raised about when to choose double mastectomy

Three-year-old Samantha Bowles presented her mother with a tall cross built from wooden toys she made with her Dad’s help.

"It's to help her heart feel better," explained Samantha while bouncing on the couch in their Placentia home.

Samantha's mother Stacy had a double mastectomy in July, after several rounds of chemotherapy for cancer in her left breast. She didn't want to take a chance on developing cancer in the other breast.

"I'd rather get it done with all at once now and take the hit instead of having to worry about it and have it still hanging over my head or the possibility of having to go through chemo again,"  said the 37-year-old Bowles.

Bowles' story is becoming more and more common.

A recent study of 190,000 breast cancer cases in California between 1998 and 2011 found a six-fold increase in the percentage of women with early-stage cancer in one breast who were choosing double mastectomies, jumping from 2 percent in 1998 to 12 percent in 2011.

Women 40 and under were choosing double mastectomies at an even higher rate, according to the study, published in the Journal of the American Medical Association. By 2011, about one-third of these women were choosing a double mastectomy, compared with 4 percent in 1998.

But the JAMA study found that from the standpoint of surviving the original cancer, the radical procedure is unnecessary.

The survival rate for women who had double mastectomies was about the same as for those who chose a lumpectomy followed by radiation, said Scarlet Lin Gomez, senior author of the study and a researcher at the Cancer Prevention Institute of California.

A double mastectomy does not guarantee the original cancer won’t return, said Gomez. She acknowledged that it does lower (though not eliminate) the risk of developing a new breast cancer. 

So what is driving the surge? 

"I think it's complicated and it's probably not one single factor," said Gomez. "We think it may have to do with fear and anxiety and the fact that we don’t really know too much today about what causes breast cancer."

She's on the right track, said Dr. Amy Kusske, surgical director of the UCLA Breast Center Santa Monica, where Stacy Bowles is being treated.

Kusske said her patients who request a bilateral mastectomy when they do not need one medically are mainly seeking peace of mind. In addition, significant advances in plastic and reconstructive surgery, especially for younger women, help make the decision easier.

"When a woman is diagnosed with breast cancer it invokes a lot of fear, and so many times a patient or a person will come after getting diagnosed with breast cancer and say, 'just take them both off,'" Kusske said. 

Kusske urges women to first see how their cancer responds to chemotherapy before making a decision about mastectomy. She tries to focus patients on the odds that they won't get another cancer, which are far better than the odds that they will.

"Unless there is a good reason, a genetic disposition, or another reason to take the other breast, we try to persuade the person they don’t need to take off a normal part of their body," said Kusske.

But Kusske said if a patient insists on double mastectomy, she honors her wishes, noting that psychological health is critical to a woman’s well-being.

The JAMA study also found that the big increase in double mastectomies has been largely driven by privately-insured white women who are treated at academic hospitals. Women of color, especially Latinas, and those on government-funded insurance, tend to have just one breast removed.  The authors say it will take more research to figure out what is contributing to the gap.

Meanwhile, Stacy Bowles is hoping she can soon get back to normal life. She’s endured five months of chemotherapy, the double mastectomy, and is now finishing up radiation treatments.

Her husband Graham said when they think back to when Stacy was first diagnosed in January, they have no regrets about the radical mastectomy.

"Throughout January we were sitting here, not even knowing if we would make this Christmas together, so to never go through a month like that again was quite an easy decision," he said.