Stigmatization and Male Identity: Norwegian Males’ Experience after Identification as BRCA1/2 Mutation Carriers

Abstract

In families with hereditary breast and ovarian cancer, there is limited knowledge about the reactions of BRCA1/2 mutation positive males. In the present qualitative study, fifteen BRCA1/2 mutation positive men in Norway participated in two successive, in-depth interviews. Seven female partners participated in the second interview. The men reported strong emotional reactions to their positive test results, and they expressed a desire to keep the genetic information private. They considered discussing their test results or health related information with other males as difficult, and they perceived females as their sources of social and emotional support. Interestingly, the second interview revealed important information not communicated during the first interview. The findings of this study contribute to the discussion of whether men who test positive for a BRCA1/2 mutation should receive tailored genetic counseling sessions. Health care providers should be aware of psychological vulnerability in these men, likely stemming from fewer emotional supports in their social networks.

Within-Gender Differences in Medical Decision Making Among Male Carriers of the BRCA Genetic Mutation for Hereditary Breast Cancer

“…The limited existing research suggests that men are reluctant to seek out genetic testing. While women with BRCA mutations form communities, men find it difficult to talk to other men and rely on women's support instead (Strømsvik, Råheim, Øyen, Engebretsen, & Gjengedal, 2010). Research identifies sex/gendered experiences with health care in general; men are less willing to seek out medical treatment for illness or other social support (Daly, 2009).…”

Psychological Impact of Male Breast Disorders: Literature Review and Survey Results

“…Alexithymia is the inability to recognise and express emotion; traditionally thought a male characteristic, its incidence is actually equal in both sexes at around 10% [30]. Also of note is that women provide and receive more emotional support than men, with most men and women seeing female friends/associates as their main source of support [31]. …”

“…Strength (emotional and physical), muscular development, invulnerability and control are associated with the male psyche in health [31,32]. Shame, perceived stigma, vulnerability, sadness, anxiety, a sense of unfairness, loneliness and a fear of being marginalised or subordinated within gender hierarchies are all associated with male breast problems, even carriage of the BRCA2 gene [31,33].…”

“…Shame, perceived stigma, vulnerability, sadness, anxiety, a sense of unfairness, loneliness and a fear of being marginalised or subordinated within gender hierarchies are all associated with male breast problems, even carriage of the BRCA2 gene [31,33]. In one study, 43% of men said they would question their masculinity if diagnosed with MBC [34], and this sentiment is echoed in publications from around the world [35].…”

Developing genetic counseling for male BRCA1/2 mutation carriers based on their own experiences

“…It is especially important to recognize male carriers who have strong emotional reactions to positive genetic test results, and provide adequate support for them. [17] Counselors' ability to meet the counselees' psychological needs in a satisfying manner is also an important factor for satisfaction with GC of counselees with hereditary cancer syndromes. [18] Accordingly, genetic counselors have recognized a need for better training to prepare them for encountering counselees' grief and loss, then implementing appropriate GC.…”