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There has been speculation — but little research — about whether lesbians are at higher or lower risk for breast cancer than heterosexual women. Now Dr. Deborah Bowen, a psychologist at the Fred Hutchinson Cancer Research Center and member of the Lesbian Health Research Institute, is conducting breast cancer research that includes lesbians.
"Five years ago, this was guesswork; there was no data," she told me in a recent interview.
In talking with lesbians, Bowen realized that the common perception was that breast cancer was more frequent among lesbians — and that perception was frightening. As a scientist, she knew there was no proof one way or the other yet. "That's when I began thinking that we could make some inroads into this," she said, "either by collecting new data on lesbians or else by including questions about sexual orientation into existing studies." In fact, she has done both - she has initiated studies specifically on lesbians and breast cancer and has begun to examine sexual orientation in large-scale community surveys.
"The biggest risk factor for getting breast cancer is being a woman," Bowen said, "and the second biggest risk factor is age. Even though we hear a lot about younger women getting breast cancer, it is really a disease of older women. The problem is that very few people have studied older women past menopause. So we don't even know much about breast cancer in women in general."
Other risk factors include a family history of breast cancer. "Having a close or even a distant relative who has had breast cancer is now known to put women at higher risk for breast cancer, but we don't know much about why," Bowen said. "Much of the research has focused on women who have multiple relatives with breast cancer, but that only accounts for about 4% of all women. What about the woman who had a great-aunt Matilda who had breast cancer? How does Aunt Matilda's breast cancer transfer to her?"
Cancer researchers are also learning more about environmental exposures, "the toxins, chemicals, and maybe even the radiation that we experience, some of it naturally occurring and some it put there by technology," Bowen said. "But we don't how or when exposure to these environmental factors has to occur in order to become a risk for breast cancer."
The Institute of Medicine of the National Academy of Science has published a report on lesbian health that will stimulate funding for research on lesbian health issues. Bowen said: "It's expensive to do this kind of research. You have to have lots of money to call up 20,000 women, and with breast cancer you have to call a lot of women in order to reach some who have the disease."
Bowen's research team now asks about sexual orientation in both paper surveys and telephone interviews. They ask whether subjects identify as heterosexual, bisexual, lesbian, or other, and also about sexual behavior. "If we only ask the former, we lose women who have sex with women but don't identify as lesbian, and if we just ask about sexual behavior we lose women who are not currently sexually active."
Bowen thinks there are two camps of thought about breast cancer in the lesbian community. "One has to do with reproductive factors. Fewer lesbians have children than do heterosexual women. Not having had children or having had children late might be a factor; pregnancy might cease certain hormones linked to the development of breast cancer."
"The other thought has to do with reliable, good, open, access to health care," Bowen said, "and lesbians may not have such access. We know that if cancer is caught at a later stage when it has had more chance to grow and spread to other parts of the body, it's harder to treat. The theory goes that if lesbians have a harder time finding affordable, affirmative check-ups, they may be less likely to have mammograms or interact with a health provider in a way that would help with early diagnosis. So it may be that lesbians aren't at higher risk, just that they don't get good health care and are likely to be diagnosed with breast cancer when it is harder to treat."
I asked what she would recommend that health care professionals do to increase the comfort of lesbian patients. "The person who comes to a doctor has to trust that doctor and has to feel comfortable bringing scary problems there. I'm hypothesizing that one problem bringing up sexual orientation in a health care setting is that you might feel okay saying you have a cold or a stomach ache, but not having the provider feel your breast, for example. Lesbians might also worry that the provider might force them to use high-tech solutions when they would prefer to try alternative solutions. Lesbians often have good reason not to trust 'the system;' right now the solutions for breast cancer have to with technology, such as chemotherapy, radiation, or surgery."
She also recommends that lesbians look for open, trustworthy providers in their communities.
Esther Rothblum is Professor of Psychology at the University of Vermont and Editor of the Journal of Lesbian Studies. She can be reached at John Dewey Hall, University of Vermont, Burlington, VT or by email.
