And Then There Were None

reprinted from the Gay City News

July 3, 2003

By MICHELE FORSTEN

Lesbian cancer support groups fall by the wayside.

Right now, in a town somewhere in America, a young girl is wondering if she's the only lesbian in the whole world. And right now, in New York City, therapy capital of the world, I, too, wonder if I'm the only one--the only lesbian seeking a lesbian cancer survivor support group.

Unlike cities such as Chicago, Atlanta, Seattle, and Washington, New York City does not have a lesbian-centered or mainstream organization offering these services, even though some, such as SHARE (Self-help for Women with Breast or Ovarian Cancer), are trying to get a lesbian support group off the ground.

But other service organizations, including some of the city's hospitals like Beth Israel, have stopped offering such support. And then there are those, like Cancer Care, that question why lesbian cancer survivors need a separate group since -none of our clients have had issues about being able to be understood or about access to resources, according to one of the organization's social workers.

It is true that many of the issues are the same for lesbians as for other women, but whom lesbians feel comfortable talking to about those issues is another story. Lesbian cancer support services seem to have fallen through the cracks in New York and that points to a larger problem, one that lesbians all over this country experience-their invisibility in the health care system.

My experience is a case in point. After participating in a six-week breast cancer support group run by SHARE in which I was the only lesbian, I needed to discuss more intimate concerns about body image with cancer survivors who were lesbian. I had a double mastectomy and was mourning the loss of my breasts while developing an aversion to touching my lover's breasts because it made me more aware of my loss.

SHARE had a lesbian support group listed in its calendar but it didn't run because there weren't the minimum three people signed up for it. Searching the web, I found that Cancer Care's website addressed the issue of sexuality and cancer, but sentences such as -For many couples, intercourse is commonly felt to be the end all be all of sexual pleasure- turned me off to what was available there. So I began in earnest to try to find a lesbian group.

The Lesbian, Gay, Bisexual & Transgender Community Center in New York lists in its calendar a lesbian breast cancer support group that meets on the second and fourth Tuesdays, from 6 to 7 p.m. -Women cancer survivors welcome,- the blurb stated. I showed up for it one Tuesday but nobody else did. Many voice mail messages left for the contact person were not returned. According to Inga Sarda-Sorensen, the Center's communications director, as long as the room rental fee is paid up, it will continue to be listed in the calendar, whether the group actually meets or not.

An 800 number listed in the biweekly national newsletter Lesbian Connections for a weekly lesbian cancer support group in New York run by the American Cancer Society yielded a recording that the group had been discontinued.

Since it didn't look like I was going to find a group, I called SHARE asking to speak to a lesbian cancer survivor volunteer. I was told that SHARE doesn't ask for that information from its volunteers.

"But it's a good idea and I have thought about asking our volunteers who are out if we can list their sexual orientation to be able to accommodate requests like yours," said Barbara Krauser, director of the SHARE hotline.

Meanwhile, Sally Cooper, director of breast health at the American Cancer Society, told me that its Reach for Recovery program had three volunteers who identified as lesbians and were cancer survivors. I called that program's 800 number and asked to be put in touch with a lesbian volunteer. After answering intake questions, I was told I would receive a call back within 72 hours. Nobody called back.

Somewhere in this odyssey my partner and I joined Gilda's Club and went to its monthly gay and lesbian cancer networking group. There were two gay guys and us. One of the guys had had colon cancer and the other was the lover of a closeted man with cancer who had a wife who didn't know about their relationship. This wasn't exactly the right group to talk to about my concerns.

So where does this leave lesbian cancer survivors? Is it true, like the Cancer Care social worker told me, that there is no demand for lesbian-specific cancer services?

Part of the problem is that there is no accurate assessment of the number of women who partner with women in the United States, and no stats on how many have been affected by cancer. But with three million women over the age of 20 in New York City, an estimated ten percent of them who partner with women, and a lifetime incidence rate of cancer among women at one third, there are likely tens of thousands of lesbian cancer survivors living here. So why are there no support groups in New York City for us? Gay males with prostate cancer have at least one option that I know of: an ongoing group at St. Vincent's Comprehensive Cancer Center.

The American Cancer Society's Cooper says she has been involved with lesbian cancer support groups for more than 20 years and has never seen much participation in them. She questions whether they are really needed.

"Maybe lesbians are getting their support in mainstream groups," she said.

Memorial Sloan-Kettering, St. Luke's-Roosevelt, Mt. Sinai, NYU Medical Center, and Beth Israel are some of the hospitals that have ongoing therapy support groups open to all women as do SHARE and Gilda's Club. Cancer Care's Floyd Allen said that lesbian groups haven't taken off because just one or two people have shown interest.

"Most take advantage of our individual services," he explained, "one-on-one free counseling services with a social worker."

And, if you are wondering why Callen-Lorde Community Health Center, New York's only medical facility dedicated to meeting the health care needs of the LGBT community, isn't the home for such an initiative, the reason is that only 10 percent of its clientele are 50 years of age and older, and there hasn't been a demand for cancer support services, according to Dr. Dawn Harbatkin, medical director. According to the New York State Department of Health website, more than three-quarters of the women who are diagnosed with breast cancer are over the age of 50.

Two years ago, Mindy Schiffman, a lesbian clinical psychologist and certified sex therapist with experience working with cancer patients, was offered the -opportunity- to start a support group for lesbians with cancer. This group was to have been a collaboration among a couple of New York City hospitals. Unbelievably, these major medical institutions were not prepared to compensate her; instead they urged her to apply for grant money.

Carolyn Altman, director of clinical services for SAGE, which has a membership of lesbians and gay men over 50, said, "I think there is a need for a lesbian cancer support group for SAGE members; however, our activities are member driven and there hasn't been an expression of demand."

According to Diane Bruessow, founder of the Long Island Lesbian Cancer Initiative (LILCI), support groups for lesbians with cancer are difficult to maintain because of barriers that clients face.

"For any group to succeed, all the participants need to have the same availability, feel well enough to attend, and find the location geographically accessible," she said. "Add to this the cultural considerations of a lesbian group-many lesbians are completely closeted, others won't disclose their sexual orientation in their neighborhoods, some women who partner with women won't use the word -lesbian- to describe themselves-and one can see how difficult forming such a group could be."

As an alternative to a support group, LILCI offers weekly one-on-one telephone calls by peer volunteers who are matched with women with cancer, their partners, or caregivers. This CARE (Caring and Reliable Ears) network was created by the Mary-Helen Mautner Project, the only national organization dedicated to lesbians with cancer, which offers lesbians all over the U.S. the chance to hook up with a peer volunteer.

But for some women, phone support cannot replace face-to-face contact. I have seen many postings on the Lesbian Cancer List listserv from participants about the frustration of trying to find a support group that has at least some other lesbian participants.

Yet, in some parts of the country, lesbian support groups are running and doing well. Kim Goodman, director of client services for the Washington, DC-based Mautner Project, says her weekly support groups there, led by two trained mental health care providers and sometimes co-facilitated by a cancer survivor, are popular, but points out that "it takes a lot of energy to maintain a group and we're lucky to have enough staff to keep them going."

There are now about 30 members of the National Coalition of Lesbian & Feminist Cancer Projects, formed in 1991 by four pioneering community-based organizations-the Mautner Project, the Women's Community Cancer Project in Boston/Cambridge, the Women's Cancer Resource Center in Oakland, and the Lesbian Community Cancer Project in Chicago. Most coalition members provide support services in addition to advocating for LGBT-sensitive health care and the inclusion of sexual orientation in research demographics, maintaining resource directories of lesbian-sensitive medical professionals, and providing community education. In some cases, volunteers help clients with chores, accompany them to doctors appointments, and prepare meals for them.

According to Bruessow, a physician's assistant volunteering full time for the last two years to get the Long Island project off the ground, "progress is slowly being made by these grassroots efforts throughout the country."

Chicago's 13-year-old Lesbian Community Cancer Project, for example, contracts with two licensed therapists to run a weekly caregiver support group and a survivor's group.

"Women, especially those who aren't out, have trouble making that first step," said Mona Grimes, the program's director. "So we offer a buddy program for women who aren't ready for a group and pair them with a lesbian who has been through a similar experience."

There's very little or no money in the bare bones budget of many of the lesbian cancer projects for outreach, so word of the services provided gets out slowly. Mautner's Goodman observed, "Lesbians don't know what resources are out there and assume they don't exist."

She puts the ball back in health care professionals' court.

"Health care professionals need to keep good records about lesbians who inquire about lesbian-centered services," she said. "The women in treatment are tired, so the health care professional needs to be proactive."

So what's to be done? Lesbian cancer survivors, no matter how tired they are, have to marshal energy to ask for the support they need. For some, it may mean coming out-for the first or second time.

Too often I heard words like those uttered by St. Vincent's Comprehensive Cancer Center's Michael Fagan, "Our marketing is very limited. If the director of the breast health center had enough interest in a lesbian cancer support group, I'm sure she'd act on it."

Lets act on it. It's shameful that a city as big as New York doesn't have a lesbian cancer project. In 1996, the Atlanta Lesbian Cancer Initiative was born when a newly diagnosed lesbian couldn't find the support she needed. Today, it offers lesbians a wide range of services, including a support group for survivors and their significant others.

If you are in New York, sign up for the six-week "Lesbians Facing Cancer" support group at SHARE, which is conveniently located in midtown Manhattan, so it can run. Show up at the monthly gay and lesbian cancer networking group at Gilda's Club, which is led by a lesbian therapist. Call St. Vincent's and say you want it to offer a support group for lesbians. Come out to your doctors and mainstream cancer organizations and demand the services you need.

Every lesbian, no matter where she lives, should have the opportunity to get support from other lesbian survivors. In this day and age, no lesbian should have to feel as if she is the only lesbian with cancer on the planet.

Michele Forsten is a writer living in New York City and may be e-mailed at [email protected].


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