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Monday, December 7, 2015

Sexual Minority Women with Breast Cancer - How is Our Experience Different, How is it the Same



As my readers already know, I am a lesbian who has had breast cancer twice, and I am also a social science researcher.  After my own breast cancer experiences, I started wondering a) why isn't there more information out there about what going through breast cancer is like for lesbians like me, and for other sexual and gender minority women? and b) what can I do to increase the amount of information that is available for women like me who are facing such a frightening diagnosis and experience?  There are many ways that we could explore the breast cancer diagnosis and treatment experiences of sexual and gender minority women, so I chose to start with a study of stress and social support, with a focus on their experiences in the health care system and the impact that breast cancer has on their bodies and their relationships.  

I am crowd-funding this first study of the experiences of sexual and gender minority women (lesbian, bisexual, transgender) who have had breast cancer.I am collecting the data for this study using an online survey. Potential participants must have had breast cancer at any point in their life, must identify in some way a sexual minority (as a person who is attracted to or has had relationships with other people of the same sex, or who identifies as lesbian, bisexual, or queer) or a gender minority (gender queer or transgender).
 Here's why this study is important:
Sexual minority women are essentially invisible in academic and mainstream breast cancer literature and in breast cancer advocacy movements. While sexual minority women may still find useful information in literature written from and for the female heterosexual perspective, the heterosexism in these written accounts of breast cancer and recovery experiences effectively communicates that the sexual minority woman’s breast cancer experience is unimportant and reflects the heterosexism many sexual minority women encounter in health care settings.
This invisibility in the breast cancer literature, combined with experiences of heterosexism and homophobia in health care settings, and barriers to health insurance and access, may contribute to under-utilization of breast cancer screenings by lesbian and other sexual minority women and may serve as barriers to seeking the help and support they need during one of the most difficult times of their life. Because sexual minority women may not have a community of other sexual minority women with breast cancer around them, breast cancer can be a stressful and isolating experience. An additional result of this invisibility is that care providers lack a real understanding of how their interactions with sexual minority women and the different social, family, and interpersonal influences in the lives of sexual minority women function as sources of stress or support for sexual minority women facing breast cancer.
This study asks if sexual orientation and gender identity are related to stresses and supports in the lives of sexual minority women with breast cancer. This is an exploratory study, using personal accounts to discover the issues and experiences faced by this population. Data is collected using an  electronic survey. The specific aims of this study are to: 1) learn about the breast cancer experiences of sexual minority women; 2) to explore sources of stress encountered by sexual minority women facing breast cancer; 3) to explore sources of support available to and needed by sexual minority women facing breast cancer; and 4) to develop written resources for sexual minority women facing breast cancer.
Based on the limited amount of research on this population, it is clear we need to learn more about the breast cancer experiences of lesbians and other sexual minority women, about the stressors they face during treatment, and about their specific support needs.