Scientists are mystified. They say there is little convincing evidence showing that women with cancer in one breast will develop it in the other. Yet in growing numbers, women undergoing mastectomy are asking surgeons if they should go ahead and remove the healthy breast, too.
So prevalent is this phenomenon that it became a major session at the San Antonio Breast Cancer Symposium, an annual gathering of science and medical experts that this year has drawn more than 7,500 people from 96 countries. The symposium offers professionals the opportunity to share new knowledge and work together to improve care for breast cancer patients.
There are still unanswered questions and unmet challenges to address.
Surgeons who spoke at the well-attended session on mastectemy protocols said there are several reasons women ask about preventive double (or bilateral) mastectomy, but the most common one is to lower the risk of cancer spreading to the healthy breast.
“The chance of getting cancer in the healthy breast is less than 1% a year in most women,” stated Ismail Jatoi, professor and chief of the division of surgical oncology and endocrine surgery at the University of Texas Health Science Center at San Antonio. He added this “tiny risk” does not justify a drastic surgery that will change a woman’s life and that cannot be reversed.
“If you lose both breasts, reconstructive surgery won’t ever give you the same breasts,” Jatoi said. “You won’t have the sensation. Your feeling about yourself is going to be different. Your relationships may be different. It has a huge impact – and possibly an adverse effect – on your quality of life.”
A Boston researcher at the Dana-Farber Cancer Institute said anxiety and fear of recurrence are associated with patients’ tendencies to perceive risk. Ann Partridge, a breast oncologist, reported on the study of 560 women who chose preventive double mastectomy.
“If someone is anxious when they are diagnosed – and that’s especially true for our young patients – dealing with lots of concerns and life issues, how can they hear all those numbers? They just want to get it (cancer) out.
“Recent findings suggest that patients are making decisions about surgery based on inaccurate perceptions of risk,” Partridge concluded.
Jatoi echoed that sentiment in an interview following the session. “There’s a lot of media hype over breast cancer…The anxiety factor is way out of proportion to the risk,” he said. “Taking out a healthy breast is not something we as doctors should be doing, unless the woman is at very high risk for another cancer.”
Women who are at very high risk “are carriers of the BRCA 1 or BRCA 2 gene, or have had mantle radiation (a form of radiation therapy),” he said. Preventive mastectomy is advised for these women.
The Boston study appears to support the theory that women are overestimating their risk of a second breast cancer. Partridge and her research team found women believed that 10 in 100 of them would develop cancer in the other breast if it were not removed within five years of diagnosis – a much higher figure than Jatoi’s estimate of fewer than 1 in 100.
It’s not surprising, then, that when women were asked for their reasons for choosing aggressive surgery, the number one reason was to lower their risk of cancer in the healthy breast. Reason number two: “95% of women desired peace of mind. We heard that over and over again,” she said.
Women also thought the surgery would extend life, allow them to forego annual mammograms and other followup tests, and provide cosmetic symmetry since breast reconstruction produces a more uniform appearance.
Reconstructive surgeon Andrea Pusic, a physician at Memorial Sloan-Kettering Cancer Center in New York, discussed the cosmetic issue in the center’s study of women who underwent double mastectomies. Most chose to follow up with reconstructive surgery using implants. “Patients want their reconstructions to match,” she said.
To illustrate her point, she showed dramatic photos of women not in the study who had reconstructive surgery to replace the cancerous breast that was removed but chose to keep their healthy breast. After eight years, the natural breast had sagged, while the implant had risen. Pusic admitted the “results can be disappointing in the long term.”
She found that women who had both breasts removed and reconstructed were happier with their appearance than those who kept the healthy breast.
“The women themselves are choosing the more aggressive surgery in spite of the fact that there is no survival benefit,” she said.
Like the New York City patients, women in Boston who chose bilateral mastectomy were satisfied with their decision when surveyed two or three years after surgery.
“90% of patients said they would choose the surgery again, 97% believe they knew the risks and benefits of each of the options they were offered, and 93% were sure that the surgery was the right option for them,” Partridge said.
Dale Eastman, a survivor attending the San Antonio Breast Cancer Symposium, faced the choice between a single or double mastectomy in 1991. Eastman opted to remove only the breast with cancer, and then underwent chemotherapy and drug treatment. Nine months later, she decided to have the healthy breast removed, too.
“I was scared not to do it,” Eastman recalled. “My doctor and the whole team (of people who were treating me) told me there was a 99% chance the cancer would occur in the other breast.”
Eastman, who was 49 at the time, got implants that gave her the appearance of natural breasts. “They lasted 22 years and then started leaking and causing trouble,” she said, noting that implants have a shelf life. She had them surgically removed and chose not to replace them.
Eastman’s experience 24 years ago led her to become a patient advocate for women with breast cancer. Frustrated by limited treatment options and information in 1992, she and three other survivors founded the Alamo Breast Cancer Foundation. The Foundation offers scholarships to survivors to attend the San Antonio Breast Cancer Symposium and interact with leading experts during Hot Topics Mentor Sessions.
One of the largest regular meetings held in San Antonio each year, the symposium is a homegrown phenomenon that started in 1977 with about 50 people, organized by two faculty members at the UTHSCSA. A recent study estimated the annual meeting’s economic impact on San Antonio at almost $20 million. The UTHSCSA Cancer Therapy and Research Center remains a sponsor of the major event, along with the American Association for Cancer Research and Baylor College of Medicine in Houston. The San Antonio Breast Cancer Symposium continues through Saturday at the Convention Center.
*Featured/top image: Scientists from 96 countries gathered at the Henry B. Gonzalez Convention Center to share up-to-the-minute findings in research about breast cancer. Photo courtesy of SABCS/Todd Buchanan.
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