So far, the information we have on breast cancer in lesbians has been both limited and contradictory. The large national cancer registries and surveys do not collect data about sexual orientation, leaving lesbians embedded and invisible among this vast wealth of information. Other ethnic, geographic and racial groups have been able to use the data gleaned from these statistics to develop programs to erode the health disparities they face. They know precisely how prevalent cancer is in their communities. We don’t.
Some research has been conducted that specifically addresses lesbian cancer risks and experiences, but the results have been inconsistent. In almost every case, the sample sizes have been too small for us to draw reliable conclusions. We need more organizations like the Lesbian Health Research Center at the UC Medical Center in San Francisco and major financial backing to develop solid data about lesbians and cancer.
While we still await definitive state-of-the-art research, some people currently believe that lesbians have an increased risk of developing breast cancer, based on a “cluster of risk factors” theory. Certainly, there is no physiological or genetic difference between lesbians and heterosexual women. The increased risks are a result of behaviors that are a result of the stress and stigma of living with homophobia and discrimination. Each of these behaviors carries with it an increased risk of cancer. Taken together, as a cluster, they could more than double a lesbian’s chance of getting cancer. Again, the data on these behaviors is mixed in its results and it important to remember that many people with known risk factors never develop cancer.
The four most-cited cancer risk factors in the research on lesbians and breast cancer risk are:
- Cigarette smoking – data suggest that lesbians smoke cigarettes at a substantially higher rate than heterosexual women.
- Alcohol use – some research reports higher rates of heavy drinking among lesbians than heterosexual women
- Obesity – some studies report that lesbians are more likely to be overweight or have a BMI over 25.
- Pregnancy – lesbians are less likely to have biological children before age 30, which would offer some protection against cancer.
The research on lesbian cancer screening rates is consistent, disturbing, but not surprising. In every location surveyed, lesbians reported lower rates of mammography, colonoscopy and pap smears than their heterosexual counterparts, due to a combination of limited financial access and perceived unwelcome. To begin with, lesbians are less likely to have adequate health insurance coverage than heterosexual women, as most employers do not offer coverage for unmarried domestic partners. Even when cost is not a factor, previous or feared negative responses from health care providers keep too many lesbians from seeking routine screenings. Provider insensitivity and ignorance follows the unwelcome that begins in the waiting room with the magazines and medical forms that do not match our lives. Until health care facilities and providers become knowledgeable, respectful and safe for lesbians, even free screening services will continue to be underutilized. Unfortunately, this can also result in cancers being detected at later stages when the prognosis is worse.
I live in New York City and do not have cancer. Sometimes, I imagine a lesbian who has just been diagnosed with cancer and is living in a small town in Utah or Iowa, not in one of the few cities with lesbian cancer programs. I wonder if it is safe for her to be out to her oncologist. This woman doesn’t have the option of joining a lesbian cancer support group.Will she go to a group that is comprised of heterosexual women? Will she feel safe being out there? Her partner can’t go to a caregiver group for lesbians. And do we really think she’ll be comfortable talking about the effects that chemo has on her sex life in a roomful of men?. I picture the two of them using the internet to learn more about their cancer and survivorship issues. Whenever I visit a website, I pretend I am this couple and type the word “lesbian” in the search box. More often than not, the search produces no results. Invisible still.
We need solid research about the breast cancer risks of lesbians. We need health care facilities and cancer organizations to respect our “families” and lives. We need to find information about our cancer experiences on all major cancer websites. There are many of us, committed activists and organizations, across the country working on these issues right now. It will take all of us to make a difference.
This article, written by Liz Margolies, LCSW, first appeared on Dr Susan Love’s Research Foundation website and can be read by clicking here