Lesbian sexuality & breast cancer

One in nine Canadian women will be diagnosed with breast cancer and one in 26 Canadian women will die from it. Somewhere in the midst of those statistics are lesbians, who face their own particular issues with the disease.

“There’s nothing out there about the effect of losing your breasts on your sexuality,” one participant told researchers for a new Ontario study called the Lesbians And Breast Cancer Project. “Which made me think, ‘What? No one plays with anyone’s nipples anymore?’ There are women like myself, who can’t have an orgasm without the involvement of their nipples. You lose your boobs, what do you do now? It’s very frustrating. There’s things like that, that people don’t like to talk about.”

The project is aimed at getting women talking. With more than a dozen agencies and organizations represented on the team, the group hopes to conduct research based on lesbians who have experienced breast or gynecological cancer.

“We have yet to hear in Ontario a real chorus of voices, of lesbian voices, speaking about what it’s like to have cancer, what works in terms of care and support from health professionals and from the lesbian communities and what needs to change,” says project coordinator Chris Sinding.

Using a series of in-depth interviews and focus groups, project organizers want to speak to about 45 lesbians by this November. So far six interviews have taken place and it’s already obvious that there are many issues lurking. Particularly sexual ones.

“Your partner being of the same sex does not allow you to avoid the fact that you’ve had a cancer that is sexuality-related,” one of the participants told researchers. “Because my partner has not had that cancer, when I have a sexual relationship with her – or when I’m in her presence and we’re being sexual – the fact that my body and her body are different in that way is always present.”

Researchers are planning targeted focus groups this spring with lesbians of colour, lesbians living in rural areas and lesbians with disabilities.

While there aren’t many statistics dealing specifically with lesbians and breast cancer, what is clear is that there is a difference in how they experience the illness. A US study mentioned in the September 2001 issue of Out magazine suggests that on average heterosexual women saw a doctor within two weeks of suspecting breast cancer – lesbians didn’t see a physician until two months later.

Sinding says the project is important to help understand how to prevent additional pain.

“Cancer is really hard,” she says, “and there’s a whole component around suffering and cancer that is unnecessary. There is a part about our social worlds and how they respond and some of that needs to change.”

For example, there’s the lack of support services. Though there are groups for children and partners, one participant says they weren’t very useful, “because they’d have to explain who I am [to them]. So do they really want to deal with their sadness and grief and have to explain all that? No they don’t, and neither did my partner. So it becomes very isolating.”

Another participant found even visiting her doctor isolating, citing, “sitting in the waiting room, sitting in the examination room and being sort of invisible. I mean, it’s all linked again to the lesbian thing. Our invisibility is mirrored in our partners’ and often their’s is more so.”

However, what is also emerging from the project’s research is that lesbian identity can also be an asset.

“Before I lost my hair, I clipped it short twice, and I would tell people I’m preparing to lose my hair,” said one participant. “So it was the first time I could have a legitimate absolute dyke haircut. And so for me it was liberating.”

Other participants talked of their partners being more accepted after their families saw how they were cared for and how their chosen families were supportive.

* The Lesbians And Breast Cancer Project holds a launch event on Mon, Apr 14 starting at 6pm at Gilda’s Club (110 Lombard St). For more information about the project, contact Chris Sinding (416-351-3808) or Lisa Barnoff (416-351-3806) at the Ontario Breast Cancer Community Research Initiative. For more general information, check out www.cbcn.ca.