By Suneeta Ganji, MD

A growing number of women with cancer in one breast are choosing to have both breasts removed. But new research suggests that the women who should be doing this aren't - and, ironically, those who don't need to take this approach are opting for it.

The study, published Wednesday in JAMA Surgery, reveals what some doctors are pointing to as a problematic trend - as well as possible evidence of a breakdown in communication between women anxious about a breast cancer diagnosis and their doctors.

A team of researchers from various institutions surveyed nearly 1,400 women who had received a breast cancer diagnosis. For about 10 percent of these women, the procedure to remove both the cancerous breast and the non-cancerous breast - a procedure known as contralateral prophylactic mastectomy (CPM) - was medically indicated. The other 90 percent lacked the genetic risk factors and family history that would necessitate this more extreme option.

The researchers found that only about a quarter of the women who should have gotten CPM actually went through with the surgery. But they also found that, in seven out of 10 of the women who did opt for CPM, the surgery was not medically necessary.

"We've been interested in this for a while and knew something else had to be going on to explain why more women were having this surgery," said lead study author Dr. Sarah Hawley, associate professor of internal medicine at the University of Michigan. She said that the responses to the survey questions revealed that for nine out of 10 women who chose CPM, fear of recurrence was a strong motivator.

Hawley added that another factor may also be at play - the celebrity factor.

"We've seen some celebrities getting the procedure and it is getting a lot of media attention," she said. "It would be great if we had another public figure who had the other options successfully get some media attention."

Angelina Jolie has spoken pubicly about her decision to have a double mastectomy.

Breast cancer experts not involved with the research agreed that the role of fear in the decision to have both breasts removed is pervasive.

"This is a very important paper," said Dr. Craig Henderson, an oncologist at UCSF. "This is my experience with my patients. I think that once diagnosed with breast cancer, patients are very apprehensive about the recurrence, especially in the opposite breast.

"The main stimulus for CPM comes primarily from the patient, not from the physician."

This fear may be leading to unnecessary surgeries. According to the National Cancer Institute, most women with breast cancer actually have a low risk of developing the disease in their opposite breast. In these patients, CPM has not been proven to improve their chances of survival. Furthermore, this surgery carries the additional risks seen with any aggressive surgery.

Dr. Judy Boughey, a breast surgeon at Mayo Clinic who was not involved in the study, said breast cancer patients often have various reasons for either opting for or avoiding surgery to remove a healthy breast.

"I believe that both the fear factor, as well as the 'taking control' factor, weigh heavily on a patient's mind," Boughey said. "Often we educate them that removing the normal breast is unlikely to have significant impact on their outcome, yet patients frequently feel that at least they are taking the more aggressive route and doing everything in their own control to minimize the risk of… cancer [in the other breast]."

Boughey added that those women who go against advice to have both breasts removed may also do so for a number of reasons. "Even for those with 'an indication' to pursue CPM, this is still a very personal decision and is not necessarily medically required, but an option for the woman to consider," she said.

Doctors Take

Ultimately, the decision to undergo surgery to remove both breasts is a breast cancer patient's choice. The most important thing a doctor can do is to provide information to help guide that choice. Patients, on the other hand, would do well to make sure that fear or anxiety is not the main factor in their decision.

Women with breast cancer should remember that the best source of information about whether you will benefit from this procedure is a trusted physician. A conversation that covers all possible options - including more aggressive surgery - gives breast cancer patients the right tools to make the best decision for themselves.