Lesbian plague

But that funding ran dry in August. Meanwhile, for many lesbians, the disease remains all too visible. Too many women can provide a long list of friends and acquaintances who have the disease and in some cases died of it. “I was first diagnosed five years ago,” says Dennie Doucher, 45, a cofounder of the Atlanta Lesbian Cancer Initiative. “There was only one other woman we knew at the time [who also had breast cancer], and we weren’t real close to her.” That quickly changed. “In the same year I was diagnosed, three other lesbians I knew were diagnosed,” she says. “I would say at least ten, if not more, have been diagnosed since.”

Still, the evidence of just how widespread breast cancer is among lesbians remains primarily anecdotal. Even the most rudimentary information about breast cancer among lesbians is hard to come by. “The one thing we know is that lesbians have breasts,” says Rankow. “Our risk for breast cancer is not as lesbians but as women.”

Part of the reason so little data exists is that doing research on lesbian (or, for that matter, gay) health issues is fraught with methodological difficulties. “Of all the people who get breast cancer annually -- which is 180,000-plus women in this country -- we don’t know how many of them are lesbians because it’s not a question usually on the history that is taken by a physician or nurse-practitioner,” says Dr. Caroline Burnett, investigator for the Lombardi Cancer Center at Georgetown University. “We don’t approach that issue.”

Still more controversial is the question of whether lesbians are at increased risk for breast cancer. Susan Love, a professor of medicine at the University of California, Los Angeles, and author of the best-seller Dr. Susan Love’s Breast Book, says, “To know more about increased risk, you’d have to get more accurate data about the lesbian lifestyle. That’s almost impossible to get because by definition the information you get is from people who are self-identified. Any sampling you do get is going to be very biased.” Baker agrees: “We can speculate, we can try to extrapolate from the data that does exist, but we just don’t have those numbers.”

However, among many lesbians -- and several media outlets -- at least one set of numbers has achieved widespread currency, no matter how inaccurate it may be: that lesbians have a one-in-three risk for breast cancer. That higher rate, experts say, came from figures presented at a health care conference in 1992 that a reporter misinterpreted.

Still, there may be reason to believe that lesbians have particular risks that increase their chances of developing the disease. “The factors for breast cancer in lesbians may be higher, generally speaking, because they don’t have children,” says Love, noting that not bearing children or delaying childbirth until late in life has been found to increase the risk of breast cancer. “Apart from that it gets harder.” Love says she is leery about relying on other supposed lesbian characteristics -- such as obesity, smoking, or heavy drinking -- that could increase risk. Even an assumption of childlessness is questionable. “More lesbians are having children,” says Burnett. “What is going to be the effect of that?”

There may eventually be a better answer to the question of whether lesbians are at greater risk for breast cancer. The Women’s Health Initiative, a study of 160,000 women, has included questions about sexual orientation, allowing researchers to assess lesbian health.

Other study projects are tracking a variety of lesbian health care issues. “Lesbians are a hot research topic right now,” says Knutson. Still, says Biddle, “there are these openings, but there needs to be more, certainly.”

To counter the problems they have faced, lesbians are becoming increasingly self-reliant, forming their own breast-cancer groups and outreach programs to educate other lesbians. “There are a lot more community groups, a lot more local activism,” says Knutson. “We have support groups in a lot of major cities for lesbians with cancer.” Among the goals of the groups is compiling a list of lesbian-friendly health care providers and educating other providers about the need for such sensitivity.