BIRMINGHAM, ALA. (FRONTLINE MEDICAL NEWS)The perception that one’s physician had recommended contralateral prophylactic mastectomy was a particularly important factor in the decision to undergo the procedure among BRCA1/2 mutation noncarriers with newly diagnosed breast cancer in a prospective study.

Of 90 BRCA noncarriers with newly diagnosed breast cancer, a “sizable minority” (24.4%) chose to undergo contralateral prophylactic mastectomy (CPM) after learning their mutation status, Jada G. Hamilton, Ph.D., reported at the annual meeting of the American Society of Preventive Oncology.

By comparison, 88% of eight BRCA1/2 carriers who participated in the study chose to undergo CPM, and neither of two women with a BRCA1/2 variant of undetermined significance chose to undergo CPM.

On multivariate analysis, the perception that one’s physician had recommended CPM was most strongly associated with the decision to undergo the procedure (odds ratio, 11.1), said Dr. Hamilton of Memorial Sloan-Kettering Cancer Center, New York.

Other factors associated with the decision were a perception of greater risk for contralateral breast cancer (OR, 6.46) and a perception of greater pros of CPM (OR, 1.37), she said, noting that those who indicated they would feel good about having CPM and those who indicated they might feel regret if they didn’t have CPM were most likely to elect CPM.

Age, Ashkenazi Jewish ethnicity, breast cancer–related distress, perceived cons of CPM (such as disfigurement and concerns regarding a negative impact on one’s sex life), and decisional conflict regarding CPM were not significantly associated with the decision.

Presurgical genetic testing provides valuable information to women with newly diagnosed breast cancer as they begin to make decisions about treatment, Dr. Hamilton said. Although BRCA1/2 mutation noncarriers have a low (3%-10%) risk, compared with carriers (27%-37%), studies suggest that about 18% nevertheless choose to undergo CPM.

The psychosocial factors that may affect the decision are not well understood, Dr. Hamilton said.

For the current analysis, participants who were part of a larger prospective study on presurgical BRCA1/2 testing completed a questionnaire, and the frequency and psychosocial correlates of the decision to undergo a CPM were assessed. The participants were adult women with a median age of 43 years (range of 29-59 years).

The findings raise interesting questions for future work, Dr. Hamilton said.

“I think it’s really critical for future studies to dig in to what’s happening in terms of physician-patient communication around CPM,” she said, noting that it will be important to explore how such communication interacts with a woman’s past experiences, emotions, and beliefs to shape her cancer prevention decisions.

Further, the women who undergo CPM should be followed to assess their long-term outcomes with respect to factors such as quality of life, satisfaction, and decisional regret, she concluded.

The decision to undergo CPM and the effects of physician-patient communication on that decision were also addressed in another study presented at the meeting.

In that study – a mixed methods pilot study looking mainly at factors affecting informed decision making in women who had ductal carcinoma in situ (DCIS) or who were considered to be at increased risk of invasive breast cancer risk because of a diagnosis of lobular carcinoma in situ (LCIS), BRCA positivity, or 20% or greater calculated lifetime risk – anxiety about cancer recurrence was the top reason for pursuing CPM.

Despite a lack of survival benefit, an increasing number of women with DCIS are undergoing CPM, but little is known about the decision-making process, said Jessica Valente of Emory University, Atlanta.

She and her colleagues sought to identify factors impacting risk comprehension and decision making. Of 68 women with DCIS or who were at high risk for development of invasive breast cancer, 33 considered CPM and 11 underwent the procedure.

The choice to undergo CPM was significantly associated with plastic surgery consultation, increased 10-year breast cancer risk, genetic counseling, genetic testing, and higher income, she said.

The study also highlighted a lack of health literacy and understanding of related terminology.

Most participants (nearly 84%) stated that DCIS qualified as breast cancer, but only about 40% correctly defined DCIS, Ms. Valente said.

When asked what they would recommend as a treatment strategy for a friend with DCIS, 35% thought surgery would be best. A similar percentage would recommend surgery for LCIS.

“When we looked at ductal hyperplasia, fewer people thought that that qualified as cancer, and they were more likely to recommend observation,” she said.

Further, when asked to interpret the phrase “indolent lesion of epithelial origin,” which is a phrase that has been promoted as a replacement for “DCIS” in light of concerns that women are increasingly electing CPM for DCIS because of fear of the word “carcinoma” despite a 99% survival rate, only 28% of patients believed it referred to cancer.

Observation was one of the highly recommended interventions for “indolent lesion of epithelial origin,” followed by biopsy, she said, noting that only 13% recommended surgery when this phrase was used.

“Interestingly, 7.4% said an oral or topical medication [should be used for “indolent lesion of epithelial origin]” – a finding likely explained by the fact that some women interpreted the word “lesion” to mean a wound or sore on the skin, she said.

Additionally, few women were able to define contralateral prophylactic mastectomy.

Overall, despite the study population being very well educated and from a higher socioeconomic status, they had low scores for understanding terminology (8.21 out of 20), Ms. Valente noted.

The findings demonstrate that decision making in the context of DCIS remains complex and underscore the importance of recognizing patients’ knowledge of risk communication and terminology for supporting shared and informed surgical decision making, she said.

The findings also demonstrate that while fewer women felt that surgery was appropriate when the term “indolent lesion of epithelial origin” was used instead of “DCIS,” the proposed new terminology doesn’t necessarily provide the desired clarity, she noted.

“They still came up with such a broad range of interpretations that we really might be introducing a new set of conflicts and confusion when we think about changing to that terminology when we talk to patients,” she concluded.

Dr. Hamilton and Ms. Valente each reported having no disclosures. 


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