Almost half of patients with early stage breast cancer considered double mastectomy and one in six went ahead, including many who were only at a low risk of developing another breast cancer, according to a new study.
Many of the patients who proceeded had little knowledge of how little benefit double mastectomy offers in the majority of cases.
The procedure is often recommended when women have a genetic mutation that puts them at a high risk of a second cancer, but for women who are only at average risk, bilateral mastectomy is of little benefit.
The number of people having double mastectomy has been increasing over the last ten years, partly as a result of celebrities’ news stories and sharing on social media.
Lead author Professor Resume Jagsi (University of Michigan) says the fact that 1 in 6 patients are opting for double mastectomy is really striking: “We knew it was increasing, but I don't think many of us realized just how frequent this is."
As reported in JAMA Surgery, 2,578 women who underwent surgery for early stage breast cancer in one breast were surveyed. Forty-four percent of the women reported having considered double mastectomy.
After categorizing the women according to their genetic risk of developing cancer in the unaffected breast, Jagsi and team found that a quarter of those at high risk had double mastectomy, but so did 14% of those who were at an average risk.
Patients were also asked whether the procedure improves survival or decreases the chance of remission. The replies showed that patients had a poor understanding of the benefits. Of those who considered double mastectomy, only 38% were aware that it does not always improve survival and nearly all of the women who chose to have the procedure were motivated by peace of mind.
When emotions are running high, it's not surprising that newly diagnosed breast cancer patients might find it difficult to absorb this complex information. It seems logical that more aggressive surgery should be better at fighting disease--but that's not how breast cancer works."
Co-author Steven Katz (University of Michigan)
When patients felt that their doctors had strongly advised against double mastectomy, most took the advice, with only 2% deciding to proceed. When women did not perceive a recommendation, 20% chose to proceed, even when their risk of a genetic mutation was average.
Since the study was based on self-reported responses, it is possible that some surgeons advised against the procedure, but that it was not heard or understood.
"As physicians, we want to be respectful of our patients' preferences and values,” explains Jagsi."When a patient comes in saying she has already decided on double mastectomy, it can be challenging to strike that balance between respecting her preferences and adequately conveying why the medical community in general doesn't think it's necessary."
Jagsi and team call for improved communication training among physicians to help them ensure conversations with patients are more effective.