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Susan Derwin had just turned 60 when she received an unsettling call from her doctor’s office. Her routine mammogram had detected something unusual in her left breast. Deep down, she feared the worst.
“I just felt sure it was cancer,” Derwin recalled. Unfortunately, she was right.
Within two weeks, Derwin’s doctor confirmed her diagnosis, and she swiftly met with her breast surgeon to discuss her options. The recommended course was a mastectomy, but Derwin had a critical decision to make: remove only the affected breast or both.
Though a double mastectomy wouldn’t necessarily improve her survival chances, Derwin chose to undergo the procedure for both breasts, following in the footsteps of her sister, who had faced breast cancer 13 years earlier.
Rising Rates of Double Mastectomy
Many women, like Derwin, with cancer in only one breast opt for a double mastectomy, even though studies — including a prominent one published in JAMA Oncology — have shown that removing both breasts does not increase survival rates. According to the study, survival outcomes remain similar for patients who choose a double mastectomy, a single mastectomy, or a lumpectomy over the next 20 years. Despite this, rates of double mastectomy have been on the rise since the late 1990s and remain high.
The disconnect between the evidence and patient decisions might stem from the complexities of breast cancer surgery, which go beyond survival statistics.
The Emotional and Physical Burden of Screening
For some women, the decision to remove both breasts is driven by the desire to avoid the physical and emotional toll of ongoing screenings. Regular mammograms, ultrasounds, and MRIs, especially for women with dense breasts, can be stressful, time-consuming, and costly.
Becky Barber, a 65-year-old woman from Raleigh, NC, opted for a double mastectomy after her cancer returned in the same breast following a lumpectomy and radiation 20 years earlier. For Barber, the fear of repeated screenings, biopsies, and potential false alarms played a significant role in her choice. “I was done,” she said, noting that she no longer wanted to endure the anxiety associated with regular imaging.
Similarly, 42-year-old Tarah Brown from Ventura, CA, is weighing the decision to remove her remaining breast after undergoing a single mastectomy. For Brown, whose cancer went undetected in her routine mammogram, the prospect of annual MRIs and additional biopsies has raised concerns about the long-term financial and emotional burden on her and her family.
Symmetry and Personal Preferences
Another key factor influencing the decision for a double mastectomy is aesthetics. Many women seek symmetry, whether through reconstruction or flat closure, and the removal of both breasts can offer peace of mind in terms of appearance.
Derwin’s decision was also influenced by symmetry. Though she had planned to wait for the results of her BRCA genetic test, she ultimately decided to proceed with a double mastectomy for the sake of balance. As it turned out, her BRCA1 mutation confirmed that her choice was a fortunate one.
Dr. Puneet Singh, an assistant professor of breast surgical oncology at the University of Texas MD Anderson Cancer Center, acknowledges the importance of listening to patients’ values and preferences. “What’s really important is listening to the patient and tailoring the conversation to that,” Singh emphasized.
Risk Overestimation and the Role of Education
For many women, the decision to opt for a double mastectomy is driven by an overestimation of their risk for developing cancer in the other breast. Research shows that for patients without high-risk genetic mutations, the risk of developing cancer in the other breast is relatively low — between 0.1% and 0.6% per year. Still, a double mastectomy can reduce that risk, though it does not improve survival outcomes.
Breast surgeons like Dr. Laura Dominici from Dana-Farber Cancer Institute spend significant time explaining these facts to patients. “A lot of women come in knowing what they want,” said Dominici, though some, after hearing the evidence, reconsider their decision.
The Decision-Making Process
Breast cancer treatment is a deeply personal journey, and decisions about surgery are influenced by factors that go beyond data. Symmetry, fear of recurrence, the burden of screening, and personal comfort all play significant roles in how women approach mastectomy choices.
For doctors like Dominici and Singh, the priority is ensuring that patients are informed, supported, and comfortable with their decisions. While the evidence may guide them, ultimately, it is about helping women navigate an overwhelming time and arrive at a choice that aligns with their personal values.
“There’s a lot of information,” Dominici said, “but we give women space to let things settle and give them a chance to breathe.”
Conclusion
For many women like Susan Derwin, the choice to undergo a double mastectomy is not merely a medical decision but a personal one, intertwined with emotional, physical, and aesthetic considerations. Though studies may not show improved survival outcomes, the peace of mind and autonomy women gain through their choices remain invaluable.
