My Breast Cancer, My Mother, My Wife, and Me: One Lesbian’s Breast Cancer Journey

I've decided to use this blog to share my breast cancer memoir, which I hope to self-publish. The title of this post is one of the titles I'm considering. Please tell me what you think of it in the comments.

Lesbians, and other members of the LGBTQIA+ community, are essentially invisible in mainstream breast cancer literature.  Mainstream books written to guide breast cancer survivors through recovery from treatment are written with an unacknowledged assumption that all survivors are cisgender heterosexual women, and the authors of commonly available cancer memoirs are cisgender heterosexual women. While lesbians may still find useful information in literature written from and for the heterosexual survivor’s perspective, their invisibility in these written accounts of cancer and recovery experiences effectively communicates that their cancer experiences are unimportant. Many lesbians may see these heterosexist assumptions as barriers to seeking the help and support they need during one of the most difficult times of their life. Because lesbians with cancer may not have a community of other lesbians with cancer around them, and cannot find themselves in the cancer literature, cancer can be a very isolating experience. They may hunger for information from other lesbians who are going through the same experience.

I was diagnosed with my first breast cancer less than ten years after my mother survived her own breast cancer. As a survivor of two breast cancers (DCIS in 2002 and Stage I in 2007), I have been through multiple lumpectomies, radiation therapy, a bilateral mastectomy with reconstruction, chemotherapy, and a hysterectomy. In addition to being relatively young for each of these cancers, 36 and 42 respectively, I am also a lesbian.  I was fortunate in that, at the time of my first diagnosis, I personally knew two other lesbians who had also been through breast cancer. I quickly realized, however, that all of the support resources offered by local and national breast cancer organizations assumed that all patients are heterosexual, and that at fundraising events in my area, it was assumed that we were all heterosexual. If I wanted a community of lesbian cancer survivors, I would have to create that community. In 2008, I created a Facebook group for lesbians with cancer and their partners. Our membership currently numbers 321 lesbian, bisexual, and gender non-binary patients, survivors, and partners or caregivers from around the United States and the world. Publishing this cancer memoir is another step in providing lesbian cancer patients and survivors some sense of community with other lesbian cancer survivors.

I tell my cancer story using a combination of narrative text, email messages, private journal entries, blog entries, and messages from family members and friends.  Throughout my cancer experience, I have made sure my sexual orientation and my relationship with my wife were visible to healthcare providers, and my wife has been an active partner in all of my treatment decisions and in my relationships with my healthcare providers. While I have always had to be intentional about that visibility, and sometimes had to risk that visibility in uncertain environments, I have been very lucky in terms of providers being respectful of me and of us. This is an important point for those lesbians who may be putting off preventive screenings for fear of discrimination and homophobia in healthcare settings.  While these negative experiences do sometimes happen, they are not inevitable. Depending on where you go for treatment, you may find providers who are more accepting than you expect. In this context, my memoir also communicates the importance of being proactive in terms of regular healthcare and cancer screenings, and provides a list of available resources for lesbians and their partners facing cancer.