Women with breast cancer who undergo surgery have a low rate of decision regret, with the least regret for those who choose a double or bilateral mastectomy.
That’s the finding of the WhySurg Study, a survey of 1525 women who had surgery from 2009 to 2020 and were members of the Love Research Army, a volunteer group of breast cancer survivors who participate in studies.
The results didn’t surprise senior author Katharine Yao, MD, of NorthShore University HealthSystem in Evanston, Illinois. “Patients who have undergone bilateral mastectomy rarely express any regret in their surgical decision,” she told Medscape Medical News about her practice, adding that follow-up goes on for “years.”
In the survey, published in the October edition of the Annals of Surgical Oncology, the investigators employed a 5-statement validated scale about decision-making that included the item: “I regret the choice that was made.”
Overall, a minority of the participants “strongly agreed” (2.9%) or “agreed” (5.3%) with the statement, and notably women who underwent a bilateral mastectomy had the lowest rates of agreement.
“It’s important to note that the vast majority of patients were happy with their decision across the board,” said Julie Margenthaler, MD, of Washington University in St. Louis, Missouri, who was not part of the study.
Overall, the median decision regret score was low in the study population —
5 on a 100-point scale. To understand who regretted surgery the most, the investigators dichotomized scores into “low” and “high” and focused on 342 participants (22.4%) who scored 25 or higher.
In this group of high “regretters,” decision regret was still lowest for bilateral mastectomy (15.4%), followed by breast-conserving surgery (BCS; 20.2%), unilateral mastectomy (30.8%), and BCS first followed by re-excision (31.9%).
In a multivariate analysis that factored in complications and other factors for “high regret” women, bilateral mastectomy was associated with statistically significant less regret than unilateral mastectomy (P < .001), BCS (P = .003), or BCS first (P < .001).
Time to Change the Narrative About Bilateral Mastectomy?
The study authors hint that their study, teamed with other analyses and trends, could be used to help change how bilateral mastectomy is considered by guideline groups and some physicians.
The authors point out the influential Choosing Wisely guidelines, which currently state that “contralateral prophylactic mastectomy should not be performed for women with unilateral breast cancer.”
“Many papers have stated that the lack of survival benefit for bilateral mastectomy is a reason that bilateral mastectomy should not be performed,” write Yao and colleagues, to provide context on the rationale.
Nevertheless, the study authors note that during the past decade double mastectomy rates have increased and “many studies…have shown an increase in patient preference for bilateral mastectomy.” For instance, according to one study, the number of American women with invasive cancer in one breast who chose double mastectomy tripled from 2002 to 2012.
In response to these trends, we should elevate the choices and opinions of patients, the study authors suggest.
“…it might be time to change this narrative [about a lack of survival benefit] and support a model that gives patient values and preferences as much consideration as survival benefits,” write the team.
Although “guidelines all say to avoid bilateral mastectomy,” some now “refer to patient preferences” — a step in the right direction, said Yao.
Washington University’s Margenthaler did not explicitly address the subject of changing the narrative about bilateral mastectomy but did note that the basis of the Choosing Wisely guidance, a 2016 consensus statement from the American Society of Breast Surgeons, is still timely.
“We do not have any current plans to update the 2016 guidelines. However, I think that the guidelines and the conclusions that were reached in those documents are enduring and relevant today,” said Margenthaler.
Margenthaler also sounded a note of caution about the current study.
“I do think that we have to be careful when trying to generalize the results of the study to other populations given that these patients were generally younger [at a mean age of 50 years], predominantly White, [and] with over half having a family history of breast cancer,” she said.
To put into context, the National Cancer Institute states that only 5%–10% of women have a mother or sister with breast cancer, and about twice as many have either a first- or second-degree relative with breast cancer, per large population-based studies.
In short, the study population may not be representative of US women with breast cancer.
Why the Growing Preference for Double Mastectomy?
The study authors stress that in the US and elsewhere, breast cancer surgery has evolved into an example of “preference-sensitive care,” which means alternative treatment strategies exist, yet none is superior.
The reason for the growing numbers of double mastectomies, which includes contralateral prophylactic mastectomies, is multifactorial and includes the aesthetic advantage of reconstructing both breasts and technical advances in surgery such as nipple-sparing, according to multiple sources.
However, lack of knowledge about breast cancer may also play a part in patient choice, Yao suggested.
“[There] is a common misperception amongst breast cancer patients that if they have a bilateral mastectomy, they will never see breast cancer again,” she said in an email.
But breast cancer is a systemic disease, she always tells her patients. “It can come back in the breast or somewhere outside the breast and the type of surgery — breast-conserving surgery or single or double mastectomy — will not change that risk.”
Yao acknowledged that this message may not be fully digested in the surgery choice process. “These are very emotional decisions that usually don’t respond to lots of data and quoting of papers or studies.”
This study was supported by the John Wayne Cancer Foundation, the Love Research Army, and the Dr. Susan Love Foundation for Breast Cancer Research. The authors and Margenthaler have disclosed no relevant financial relationships.
Ann Surg Oncol. Published October 2021 edition. Abstract
Nick Mulcahy is an award-winning senior journalist for Medscape, focusing on oncology, and can be reached at [email protected] and on Twitter: @MulcahyNick
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