Being a lesbian matters: A qualitative analysis of the experiences of lesbian breast cancer survivors

Lesbians are at a significantly greater risk for developing breast cancer (BC) than heterosexual women.  Additionally, there is tentative support for higher rates of BC mortality among women who cohabit with same-sex partners.  Although lesbians are disproportionately affected by BC, we know very little about their experiences as BC survivors.  Therefore, there is an urgent need to better understand lesbian BC survivors’ unique experiences to develop targeted interventions for them.

Data were collected from 173 discussion boards on a lesbian-specific breastcancer.org discussion forum. Breastcancer.org is a large non-profit organization whose mission is to provide the latest reliable information about breast cancer.  The site also hosts discussion boards, blogs, and chat rooms for over 141,000 members.  Data were analyzed using inductive thematic analysis (Boyatzis, 1998).

The results of our inductive thematic analysis revealed important themes related to the unique experiences of lesbian BC survivors.  These themes included having fears about being falsely identified as transgender following a bilateral mastectomy, being concerned that one’s partner is not going to be treated like a family member, and experiencing the BC journey as an identity management crisis (i.e. not being able to “hide” one’s sexuality from providers). 

These themes suggest that lesbians likely face unique challenges during their BC journey that non-lesbian women do not. Data from our study suggest that there is a strong perception and fear that female partners will not have appropriate access and treatment decision-making rights. Health care providers should be clear about their visitation policies to allay such concerns.