Genetics of Breast and Ovarian Cancer (PDQ®): Genetics - Health Professional Information [NCI] - Psychosocial Issues in Inherited Breast Cancer Syndromes
Table 11. Uptake of Risk-reducing Salpingo-oophorectomy (RRSO) and/or Gynecologic Screening AmongBRCA1andBRCA2Mutation Carriers continued...
A number of women choose to undergo RRM and RRSO without genetic testing because of the following:
- Testing is not readily accessible.
- They do not wish exposure to the psychosocial risks of genetic testing.
- They do not trust that a negative genetic test result means they are not at increased risk.
- They find any level of risk, even baseline population risk, unacceptable.[215,216]
Among first-degree relatives of breast cancer patients attending a surveillance clinic, women who expressed an interest in RRM and/or had undergone surgery were found to have significantly more breast cancer biopsies (P < .05) and higher subjective 10-year breast cancer risk estimates (P < .05) than women not interested in RRM. Cancer worry at the time of entry into the clinic was highest among women who subsequently underwent RRM compared with women who expressed interest but had not yet had surgery and women who did not intend to have surgery (P < .001).
Few studies have evaluated the impact of BRCA1/BRCA2 test results on risk-reducing surgery decisions among women affected with breast cancer. A study evaluating predictors of contralateral RRM among 435 breast cancer survivors found that 16% had undergone contralateral RRM (in conjunction with mastectomy of the affected breast) prior to referral for genetic counseling and BRCA1/BRCA2 genetic testing. Predictors of contralateral RRM prior to genetic counseling and testing included younger age at breast cancer diagnosis, more time since diagnosis, having at least one affected first-degree relative, and not being employed full-time. In the year following disclosure of test results, 18% of women who tested positive for a BRCA1/BRCA2 mutation and 2% of those whose test results were uninformative underwent contralateral RRM. Predictors of contralateral RRM after genetic testing included younger age at breast cancer diagnosis, higher cancer-specific distress prior to genetic counseling, and having a positive BRCA1/BRCA2 test result. In this study, contralateral RRM was not associated with distress at 1 year following disclosure of genetic test results. A retrospective chart review evaluated uptake of bilateral mastectomies in 110 women who underwent BRCA1/BRCA2 genetic testing prior to surgical decisions for the treatment of newly diagnosed breast cancer. BRCA mutation carriers were more likely to undergo bilateral mastectomies when compared to women where no mutation was detected (83% vs. 37%; P = .046). The only predictor of contralateral RRM in women without a mutation was being married (P = .03). Age, race, parity, disease stage and biomarkers, increased mammographic breast density, and breast MRI did not influence contralateral RRM decisions at the time of primary surgical treatment.
Dutch women (N = 114) who had undergone unilateral or bilateral RRM with breast reconstruction between 1994 and 2002 were retrospectively surveyed to determine their satisfaction with the procedure. Sixty-eight percent were either unaffected BRCA mutation carriers or at 50% risk of having a BRCA mutation in their family. Sixty percent of respondents indicated that they were satisfied with the procedure, 95% would opt for RRM again, and 80% would opt for the same reconstruction procedure. Less than half reported some perioperative or postoperative complications, ongoing physical complaints, or some physical limitations. Twenty-nine percent reported altered feelings of femininity following the procedure, 44% reported adverse changes in their sexual relationships, and 35% indicated that they believed their partners experienced adverse changes in their sexual relationship. Ten percent of women, however, reported positive changes in their sexual relationship following the procedure. Compared with patients who indicated satisfaction with this procedure, nonsatisfied patients were more likely to feel less informed about the procedure and its consequences, report more complications and physical complaints, feel that their breasts did not belong to their body, and indicate that they would not opt for reconstruction again. Those who reported a negative effect on their sexual relationship were more likely to:
- Feel less informed.
- Experience more physical complaints and limitations.
- Express that their breasts did not feel like their own.
- Be disinclined to opt for reconstruction again.
- State that the surgery had not met their expectations.
- Experience altered feelings of femininity and perceived adverse changes in their partner's view of their femininity and their sexual relationship.