Carlson, Robert H.
SAN FRANCISCO—A woman's effort to control her breast cancer outcome is the driving force behind choosing mastectomy, even for those with early-stage disease, according to a study reported here at the Breast Cancer Symposium (Abstract 108).
There has been an increase in unilateral and contralateral prophylactic mastectomies over the past decade, and several explanations have been proposed.
“Control” was the word that came up often in the Canadian study in which 30 women were interviewed extensively about their reasons for choosing mastectomy (Half had undergone unilateral mastectomy, and half had unilateral mastectomy with contralateral prophylactic mastectomy).
All had been suitable candidates for breast-conserving surgery, and those who underwent contralateral prophylactic mastectomies had no indication for it, said Andrea M. Covelli, MD, a doctoral candidate in the University of Toronto's Institute of Health Policy, Management and Evaluation, who reported the results.
The study was done because the researchers wanted to know why average-risk women with early-stage breast cancer were choosing to undergo mastectomies that were not medically necessary.
Fear of cancer recurrence and fear of contralateral cancer were factors behind wanting mastectomies, but so was a misperceived survival advantage, said Covelli, speaking in an interview at her poster presentation. She said fear translated into an overestimation of the risk of recurrence and misunderstood survival rates.
By choosing unilateral or contralateral prophylactic mastectomy, women wish to ensure they “never had to go through this again,” she said. “They are actively trying to control their cancer outcome, and more surgery was seen as greater control.”
Discussant: Fear and Shock Drive Decisions
The Discussant for the study, Don S. Dizon, MD, Director of the Oncology Sexual Health Clinic at the Gillette Center for Gynecologic Oncology at Massachusetts General Hospital, said the bottom line he took from the study is that a diagnosis of cancer is met with fear and shock, and that drives a lot of the decision making, including decisions about elective mastectomy.
He described a model of survivorship based on the degree of distress and psychosocial anguish that accompany acute diagnosis and acute survivorship: “You've got to see everything through that lens, and you have to make sure you are discussing things through that lens,” he said.
He said it is important for clinicians to understand that how the patient reaches her decisions is as important as the evidence-based discussion that happens between the doctor and patient. A patient might say, “I want the contralateral prophylactic mastectomy because I don't want to be uneven, or I don't want to live without one breast,” and that is as important to understand as it is to understand one who says “I want a bilateral mastectomy because I don't want this cancer to come back.”
Dizon noted that women have close ties in communities and churches and social groups, which clinicians should understand are major influences, or otherwise that patient is never going to make an informed evidence-based decision.
The women in this study all had lengthy discussions with their surgeons, whom they said discussed breast-conserving surgery and discouraged contralateral prophylactic mastectomy. But the source of information that had the most impact on decision making was personally knowing a cancer patient and seeing that person live with the disease, the researchers found.
Some women in the study said they chose contralateral prophylactic mastectomy for body symmetry, the researchers reported.
A breast cancer advocate who works with support groups confirmed that body image is a deciding factor for some.
“Many women I speak with on our help line say symmetry is important because their appearance is important,” said Vicky Carr, a volunteer researcher for ABCD (After Breast Cancer Diagnosis—ABCDBreastCancerSupport.org).
Carr, a triple-negative breast-cancer survivor who had a unilateral mastectomy in 2009 said she has regrets of her own about body image. She is BRCA negative and had a unilateral mastectomy on the advice of her surgeon, who said there was no reason to lose a normal breast. “But my gut feeling all along was to have the double mastectomy,” Carr said, in an interview at the symposium. “It was not for fear of recurrence, [it was because] my looks were important.”
Although she said she is otherwise happy with the results of a deep flap reconstruction, she added: “I just wish there were certain questions I had been asked and could have had time to consider—not just scientifically based decisions, but also quality-of-life based questions, because there are other considerations besides the science.”
Only after her mastectomy did Carr learn that reconstruction involved several more surgeries, three in her case, which she was not made aware of beforehand, she said. And even after reconstructive surgery there is still a lack of symmetry.
“I had lots of choices in my cancer journey—through mastectomy, reconstruction, radiation, and chemotherapy—and in everything else I felt I made the best choices,” she said. “But choosing unilateral mastectomy was one choice I felt I was not informed enough about. Had I known the options and reasons ahead of time, I would have made a different choice.”
Living with cancer is, in many women's lives, such a short-term ‘blip’ in their life timeline dealing with the cancer, she said. “And then you go on living the rest of your life with what you have to deal with after surgery.”
The Symposium is co-sponsored by the American Society of Breast Disease, American Society of Breast Surgeons, American Society of Clinical Oncology, American Society for Radiation Oncology, National Consortium of Breast Centers, and the Society of Surgical Oncology.