The decision to undergo a double mastectomy is not one that is made lightly, but it is one that countless women have had to face over the years. The number of women undergoing the procedure has increased dramatically since 2013, when famed actress Angelina Jolie revealed that she’d had both of her breasts removed due to a mutated BRCA1 gene — which can purportedly increase the risk of breast cancer by 87 percent.
Millions of women have rushed to get testing of their own, and many have had their breasts removed as a result. But new research from Stanford University School of Medicine has shown that many of these women went under the knife for one simple reason — and it wasn’t cancer. In fact, it is supposedly because their doctors had “misunderstood” their genetic testing panels. Indeed, the scientists say that approximately half of all women who had their breasts removed didn’t need to have the surgery at all.
As the study from Stanford University explains, a surprising number of women undergoing bilateral mastectomies — or the removal of both breasts — don’t actually have the genetic mutations linked to an increased risk of cancer. According to the researchers, the increased accessibility and affordability of genetic testing has come with consequences: Genetic testing results have become more confusing than ever. Why? Because now, gene panels can test for a host of different genetic mutations or variations, and those results can be hard to understand if you don’t have a trained genetic counselor to assist with interpreting the data.
To conduct their research, the team looked at a survey of 2,000 women — and found that 50 percent of patients had genetic “variants of uncertain significance” or VUS. Most often, these mutations are not harmful.
Allison Kurian, MD, associate professor of medicine and of health research and policy at Stanford says that their data “suggest a limited understanding among physicians and patients of the meaning of genetic testing results.” Experts seem to agree, and note that the research underscores a need for genetic counselors to help both doctors and patients to understand the results from genetic testing. This would be plausible, if not for the fact that many doctors have admitted to treating patients with VUS the same as they would a patient with a cancer-causing gene. So is it really a misunderstanding, or is it taking advantage of your patients?
Because of this, it seems questionable that at least some of these unneeded surgeries were performed out of a sheer misunderstanding of the data. As Kurian explains, “Clinical practice guidelines state that variants of uncertain significance should not be considered to confer high cancer risk, and that patients with these variants should be counseled similarly to a patient whose genetic test is normal. However, many of the physicians surveyed in our study stated that they manage these patients in the same way as they do patients with mutations known to increase a woman’s risk.”
This is where things get a bit blurry. Kurian states that even though it’s against clinical guidelines to treat patients with VUS as though they have the gene mutations related to causing cancer, many of the doctors surveyed reported that they counsel them just the same. This is a blatant disregard of these guidelines, at best. One might even wonder if such actions could be construed as malpractice.
Would you want to have a major surgery for no real reason other than the fact that your doctor basically scared you into it?