Double Mastectomy Linked to Sexual, Body Image Issues in Young Women

The choice to undergo more extensive breast surgery such as bilateral mastectomy had short- and long-term effects on body image, sexual health, and anxiety for young women with breast cancer, especially in those who avoided breast reconstruction.

An analysis of 826 women age 40 or younger who underwent either breast-conserving surgery (BCS; 31%), unilateral mastectomy (24%), or bilateral mastectomy (45%) from 2006 to 2016 showed that although quality-of-life parameters improved over time, scores for sexuality and body image were consistently worse among women with bilateral mastectomy compared with BCS, reported Shoshana Rosenberg, ScD, MPH, of Dana-Farber Cancer Institute in Boston, and colleagues in JAMA Surgery.

For example, at year 1 the adjusted mean score for body image was worse for bilateral mastectomy at 1.32 (on a scale of 0 to 4) compared with 0.64 for BCS (P<0.001). This score improved at year 5 to 1.19 for bilateral mastectomy but was still worse than scores for BCS (0.48; P<0.001).

“Women who had bilateral mastectomy (with and without reconstruction) frequently reported feeling at least a fair amount of discomfort with body changes, embarrassment regarding showing their body to others, and discomfort showing scars to others at both 1 and 5 years; women who had BCS reported fewer body image issues at both points,” Rosenberg and colleagues wrote.

Similarly for sexuality, at year 1 the mean score was 1.66 for bilateral mastectomy compared with 1.20 for BCS (P<0.001); at year 5 the mean score had improved to 1.43 for bilateral mastectomy, but was still higher than BCS (0.96; P<0.001).

Within subdomains of sexual health, women who had no reconstruction reported more issues. At year 1, 43.8% of women who underwent bilateral mastectomy with reconstruction reported perceived sexual unattractiveness and 43.9% reported decreased sexual activity frequency. Comparatively, these numbers increased to 56.3% and 65.2%, respectively, among women who underwent bilateral mastectomy without reconstruction. Among women who underwent BCS, only 29.9% reported perceived sexual unattractiveness and 34.3% reported decreased frequency of sexual activity.

Finally, scores for anxiety also improved across groups but the adjusted mean scores remained significantly higher for those women who had bilateral mastectomy compared with both BCS or unilateral mastectomy at year 1 (P=0.005 for both), year 2 (P<0.001 for both), and year 5 (P=0.05 for both). Adjustments for marital status did not change the results for anxiety or depression substantially, the researchers noted, adding that given the observational design of the study, “it is important to consider that women who choose bilateral mastectomy are likely different than those who undergo unilateral mastectomy or BCS, and their surgical choices may be affected by distress experienced before or at diagnosis.”

Commenting on the study, Diane Bloom, PhD, of UNC Gillings School of Global Public Health in Chapel Hill, North Carolina, said that the results are consistent with a qualitative study she conducted with colleagues exploring similar issues.

“In attempting to reduce their risk of a second breast cancer, the women we interviewed made the assumption that there would be more benefits than harms to this more extensive surgery, and all were unprepared for the quality of life and body image issues (some irreversible) that they experienced post surgically,” Bloom said. “The implications of both of these studies is a significant step forward in the patient-centered decision process: that presurgical counseling about surgical outcomes could impact women’s decisions, or prepare them for possible post-surgical outcomes.”

Rosenberg and colleagues agreed, “Understanding how outcomes differ and change over time may be useful to newly diagnosed women making preference-sensitive surgical decision and should be communicated by clinicians during the decision process. … In addition, incorporating this information into patient-centered tools, such as decision aids, may help ensure surgical decisions are made in an informed and supportive setting.”