Lesbian plague?

Having someone assume you're heterosexual can be annoying, frustrating, and alienating. If you're a lesbian, it can also be life-threatening.

For women--one in eight of whom face the prospect of developing breast cancer--visits to the doctor often lead to questions about birth control and sexuality. That leaves many lesbians with a dilemma: Should you out yourself to a straight doctor or ignore the lump in your breast?

Whether lesbians are at greater risk for the disease--the second leading cause of cancer death among women--is still a subject of debate. But on the eve of National Breast Cancer Awareness Month in October, experts say the bigger issue is that lesbians are not getting into the. health care system for early screenings.

"The piece that should stand out is that lesbians don't get screened as often as heterosexual women because we're not in the family planning or child health care system," says Donna Knutson, a section chief in the cancer division of the federal Centers for Disease Control and Prevention in Atlanta. "It's not necessarily the sexual orientation that puts you at risk, but for whatever reason we don't go to providers as often."

The reasons, according to lesbians who have had bad experiences with health care providers, are all too clear. "When you get to a health care provider, the first thing they do is an intake of medical history," says Beverly Baker, executive director of the Mautner Project, a lesbian cancer service organization in Washington, D.C. "You get to questions like, Are you married? and you have to decide whether to say you're in a life relationship. Then, Are you sexually active and are you on birth control? If you say no, you get a big, long lecture from the person doing the intake asking if you are crazy."

Tania Katan, who was diagnosed with breast cancer four years ago age 21, says her treatment, while personal, was not affected by h being openly lesbian. Still, she ad the assumption was that she was heterosexual. "[The topic of] birth control was always on the questionnaires you had to fill out," she says and when I said I didn't use any, it always made them cock their heads.

Katan used the moment to come out to her physician. But many lesbians, says Liza Rankow, a physician assistant and lesbian health advocate, find it easier to lie. "We tend not to walk in the door, and if we do, a lot of women tend to be dishonest," says Rankow. "Lots of lesbians will leave the doctor with prescriptions for birth control pills rather than say their partner is a woman. "

No wonder. Physicians often refuse to acknowledge that female partners exist. "Partners are crucial, but they tend to be left out," says Linda McGehee, a cofounder of the Atlanta Lesbian Cancer Initiative and a professor of nursing at Georgia State University who has studied lesbians with breast cancer. "One survivor said the only thing that made her uncomfortable was when she went to the physician's office. He would look at her all the time and not at her partner. When her partner asked questions, he would look at her as if to say, What are you doing here?"

Beverly Saunders Biddle, executive director of the National Lesbian and Gay Health Association, which represents gay clinics and providers, adds, "It is such an ordeal for a lesbian to even consider health care, because we have to figure out, Do we or do we not come out? Do I have to educate another provider? What happens to my records once I come out? What impact is coming out going to have on the care I receive? Because breast cancer is such an emotionally laden isssue for women, it compounds any or distrust of the medical system the general.

For many heterosexual women, access to the medical system is through birth control; indeed, the system seems geared toward that purpose, Without the need for birth-control measures, however, many lesbians can easily neglect contact with a health care provider and subsequently neglect their health. The problem is not only breast cancer; lesbians may be less likely to get Pap smears to detect cervical cancer because doctors may not feel they need the test.

Without a doubt, breast cancer among lesbians has attracted attention the likes of which it barely had five years ago. "There's been a huge explosion," says Nancy Lanoue, 45, a founder of the Lesbian Community Cancer Project in Chicago and herself a breast-cancer survivor. "It's something that is not a secret anymore. The activism has resulted in creating visibility for the disease." The effort even attracted the attention of the federal government, which declared lesbians an underserved population in 1994 and provided money for four pilot screening projects to perform outreach to lesbians at local YWCAs.

"We surveyed women in the lesbian community about different issues--whether or not they were being screened, those kinds of things," says Connie Winkle, director of women's health services at the YWCA in Dallas. Last year 190 women, most of them lesbians, were screened for breast cancer through the project.

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, say 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 the disease. "The factors cancer in lesbians may be higher, generally speaking, because have children," says Love, 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.

"We got together around kitchen tables, in living rooms, talking about the needs for providing lesbians with support," says Andrea Densham, a board member of the Lesbian Community Cancer Project in Chicago, recalling the group's formation in 1990. "It's a grassroots organization still run by volunteers.

McGehee says her research indicated that what lesbians with breast cancer wanted besides partner involvement and respectful health care providers was emotional-support services. While many breast-cancer services exist, they often are not cognizant of a lesbian presence.

Katan's experience confirms that. She says the shock of her diagnosis was compounded by the lack of lesbian visibility she found in cancer support groups. "I was actively seeking a community of lesbian breast-cancer survivors, and I didn't find a lot of lesbians coming to those meetings," she says. "I had nothing in common with these women at the meetings other than the fact that we all had breast cancer." Katan dropped out of the groups and wrote a play about the disease to come to terms with it.

"I was in support groups that were straight; I was very uncomfortable," says Doucher, who had a recurrence of the disease in 1994 and again in 1996. "I felt it was inappropriate to come out, and therefore I could not share a lot of the things that were going on in my life. "

"My partner and I were not comfortable with some of the support services that existed," says Lanoue. "We went to a few different cancer agencies, and they were very well-meaning, but it wasn't a comfortable place for my partner. And most of the people had very different concerns."

In their efforts to get the message out about the need for screening, activists were happy to have found an ally in the federal government. And although U.S. funding of the four pilot projects ran out in August, activists hope those programs will be a springboard for a new era in lesbian health care. "It's our hope and desire that lesbian health advocacy can be done on a broader scale," says Jeanne Barkey, project coordinator for the Minnesota Lesbian Health Care Access Project. "In the grand scale of things, this was a teeny, tiny project, but it was a starting point. It's an effort from lesbians saying we should do something about lesbian health now."

RELATED ARTICLE: ARE YOU AT RISK?

All women are at risk for breast cancer. Risk increases with age: Women over 50 years old account for more than 75% of diagnoses. The majority of women with breast cancer have no identified risk other than age. The exact causes of the disease are not known, but certain factors appear to increase risk. These include:

* previously having had breast or ovarian cancer 

* having a mother, sister, or daughter with breast cancer--especially if they had it before menopause or in both breasts

* starting menstruation before age 12 or going through menopause after age 55

* not ever having had children, or birthing them after age 30

* exposure to certain environmental toxins

* heavy alcohol use

* long-term use of hormone-replacement therapy or birth-control pills

* heavy body weight or a high-fat diet 

RELATED ARTICLE: Sculpting new attitudes

When Nancy Fried arrived home from the hospital after having a mastectomy 11 years ago, she knew it was time to begin Mourning. That's what Fried, a New York City sculptor, chose to title one of the first works she created after her surgery. "It's a woman holding a severed breast in one hand [close to her other bare breast] the nipples almost touching as if to say goodbye," says Fried.

Since then Fried has amassed a powerful collection of sculptures, many of which feature headless torsos with a single breast. Her terra cotta works are on display at the Metropolitan Museum of Art and the Brooklyn Museum of Art.

Five years after her first cancer diagnosis, Fried learned she had cancer in her other breast too. While her doctor was breaking the news to her, she envisioned an altar with rows of breast--inspiration for yet another piece. She jokes that she has become a "sort of queen of breast cancer."

For Fried, her art reflects not just her own experience with breast cancer but the universal pain of loss and the eternal hope of regeneration. "One of the problems is that as long as the work has only one breast, people keep saying my work is about breast cancer," she says. "If there's a head screaming and a breast torn from the body, the breast is a symbol for the loss. One of my pieces is called The Unkept Secret, where the figure is pulling her breast back and showing her scar. For me, the secret was the one I couldn't keep--my mastectomy."

Fried, 51, hopes her work encourages people to reconsider their notions of female beauty. "We're not Jane Fondas," she says. "We age. We get rolls of fat, wrinkles, and scars. There's beauty in the aging female figure. If anything--more than the breast thing--that's what it's about."

The artist carries that philosophy into her personal life: She no longer wears a prosthesis. In an eerie reflection of her own sculpture, one store where she went to buy one was called My Secret. "I called them up screaming that this was horrible," she says now, laughing. "Everything is curtained and pink." Her own attempt to wear a "three pound, $300 blob" failed after three months. "When it was hot," she says, "I carried it around in my purse."

Despite her disease and a childhood she describes as abusive, Fried does not consider herself a victim. "I never said, Why me?" she notes. This is not the only horrible thing that happens to people. It's part of life."

RELATED ARTICLE: The wrong disease

John Mandes was seated on the patio of Denver's Mediterranean Health Food Cafe when his beeper went off July 1, 1996, a day after his 43rd birthday. He picked up the cellular phone beside his plate of hummus and returned the page. "I have bad news," the doctor reported. "Your lab test came back positive." Not for HIV. For breast cancer.

It seemed like an oxymoron. Breast cancer in men is extremely rare, accounting for less that 1% of all breast cancer patients. "I already had this weird, overwhelming consciousness of being a man with a woman's disease," Mandes says. "But being a gay man with breast cancer, I felt like an entry out of Ripley's `Believe It or Not!'"

The irony of the situation was unmistakable: For 15 years Mandes had carefully managed to elude the killer virus ravaging the gay community. Now he was hit by a cancer men almost never get. The peculiarity of male breast cancer was underscored when he went to a bookstore to read up on it. "As a man, I wasn't going through the same problem as women," Mandes says. "I didn't see myself at all in those books." He decided against a breast-cancer support group, concluding he had more in common with HIV-positive men. He sought support from the Colorado AIDS Project, where he volunteers. "I think it was a natural alliance," says Stephen Earley, an HIV-positive friend. "It boils down to the experience of facing your own mortality."

The surgery that claimed Mandes's left breast and four lymph nodes marked him with an eight-inch scar. Considering the functional, aesthetic, and sexual premium society puts on women's breasts, concedes Mandes, "women must really go through hell." Still, there is a uniquely male anxiety that most women with breast cancer don't go through: baring your chest in public. Determined not to become a prisoner of self-consciousness, Mandes faced his fears head-on. At the popular sunning spot of Denver's gay and buffed, he peeled off his shirt. "My scar is a potent reminder of everything I've been through," he says, "a badge of honor."