Kirstein, a surgical oncologist at Rutgers Cancer Institute of New Jersey, along with colleague Dr. Sharon Manne, associate director for cancer prevention, were awarded a $404,089 grant from the National Cancer Institute for just this task.
Removal of a healthy breast has risen five-fold in the past 15 years in women diagnosed with breast cancer in one breast with no family history, according to a 2010 study, Rutgers said.
“Clearly, a lot of celebrities go for a double mastectomy and it popularizes it. They are on morning shows, or movie stars or politicians. Surgeons or doctors tend to acquiesce to those kinds of people,” Kirstein said, adding that Angelina Jolie was the only exception, because she tested positive for the cancer gene.
In part, many women who elect to have both breasts removed are either not receiving enough face time with a medical professional who can explain the procedure, or they are not being given the whole picture of what it means to go through with the surgery and how they will feel after, Kirstein said.
The project Manne and Kirstein are working on is to develop a web-based tool to aid women in the decision-making process.
“Fear of return of the breast cancer and perceived risk of recurrence increase the stress related to this decision. Advances made in breast reconstruction give many women more confidence about having the procedure, whereas even 10 years ago, the risks involved might have dissuaded women from this choice. And as more celebrities are choosing (double mastectomies), this seems to make the procedure more socially acceptable to some,” Kirstein said.
She explained that just because the breasts are removed does not mean it removes the risk for cancer, nor does it restore power to the woman’s life — a common misconception about the procedure.
“It all depends on the cancer. The cancer determines it based on the DNA in the tumor. If it has invaded the blood or lymphatic system, then it can circulate. Most (doctors) worry about the recurrence elsewhere in the body. So removing it doesn’t prevent it from recurring,” she said.
The grant will entirely be used to support the development of the web tool and provide a stipend for the 80 women who will be a part of the clinical trial to compare the feasibility and acceptability of the new tool.
The tool will aim to guide women who are not predisposed to the cancer and have no family history away from the surgery option, and determine based on genetic and other factors which women would most benefit from a surgery. It will also explain the procedure and how a patient will feel post-surgery.
“If we could reduce procedures that are not medically necessary, we would reduce health care dollars. It does not affect insurance so much, but it would remove that extra surgery,” Kirstein said, adding that, currently, insurance companies will cover the surgical procedure.
“If you want to have a cosmetic procedure in this society, pay for it; (mastectomies are) not always medically necessary so they should not be paid for.”’