After being diagnosed with cancer in one breast, many young women opt to have the other healthy breast removed with a procedure called contralateral prophylactic mastectomy (CPM), despite knowing that it will probably not improve chances of survival, a new study shows.

Researchers from the Dana-Faber Cancer Institute published their results in the journal Annals of Internal Medicine.

They note that rates of the procedure have “increased dramatically,” especially in younger breast cancer patients. But until now, little has been known about why they make the decision to go ahead with the procedure.

In order to understand more, the researchers, led by Shoshana Rosenberg, ScD, MPH, of the Susan F. Smith Center for Women’s Cancers at Dana-Faber, conducted a survey across 123 women under 40-years-old who had both breasts removed, despite having cancer in only one breast.

The participants answered questions about why they opted for the procedure, knowledge of the risks and benefits involved, and how satisfied they were with the results of CPM.

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Despite knowing that CPM does not increase survival for most, young breast cancer patients underwent the procedure to improve survival chances.

Results showed that almost every woman said she decided to go with the procedure because she wanted to improve her chances of survival by preventing the cancer from spreading.

Interestingly, most of the women knew that removing both breasts does not increase survival for women who do not have a genetic predisposition to breast cancer.

Additionally, the women approximated that 10% of women with cancer in one breast would have it develop in the other breast within 5 years, but the actual risk of that occurring is 2-4%.

Shoshana Rosenberg explains that the results of the survey reveal that many patients make the decision to undergo the procedure with an unrealistic understanding of the benefits and risks of CPM.

Rosenberg adds: “Improving the communication of those risks and benefits – together with better management of anxiety surrounding diagnosis – and providing patients with the support they need to make decisions based on solid evidence – are worthwhile steps.”

Although the respondents amplified the benefits of CPM, many of them underestimated the side effects.

For example, many of the women said the effect the procedure had on their appearance was worse than what they had anticipated. In fact, 42% reported that their sense of sexuality afterwards was worse than they predicted.

The researchers note, however, that other studies have not found sexual issues to be prominent.

Rosenberg notes that their findings highlight how vital it is for doctors to convey the risks and benefits of the procedure to their patients:

We need to be sure that women are making informed decisions, supported decisions, based on an accurate understanding of the pros and cons of the procedure, and in a setting where anxiety and concerns can be addressed.”

Although CPM has little impact on survival rates for most women, those who do have an inherited predisposition to breast cancer – from a mutation in the BRCA1 or BRCA2 genes, for example – may benefit more.

Women from the study who were in this category more accurately estimated their risk for cancer in both breasts, compared with women who did not have a genetic predisposition.

Earlier in 2013, Medical News Today reported that the actress Angelina Jolie had a double mastectomy due to a mutation in the BRCA1 gene.