Gilda’s Club Delaware Valley is hosting its third annual “Creating Healthy Lives Conference: Breast Cancer Support for Lesbians and Bisexual Women and their Families” from 8 a.m.-5:30 p.m. Nov. 1 at the organization’s clubhouse, 200 Kirk Road in Warminster.
Gilda’s Club, founded by late comedian Gilda Radner, offers programs, support groups and resources to people of all backgrounds who are faced with a cancer diagnosis.
Darlene Furey, Gilda’s Club Delaware Valley’s program director and an open lesbian, said one of the goals has been to expand the organization’s offerings for LGBT individuals; recently, Gilda’s Club launched monthly networking meetings for LGBT cancer patients and survivors and their loved ones.
Furey said the meeting has only drawn about five participants each month but she anticipates a higher turnout at the monthly meetings, as well as the possible creation of a separate group specifically for lesbian and bisexual women with breast cancer, following the November conference.
Furey said she’s eager to expand attendance at this year’s event — about 60 community members turned out for last year’s conference — to spread both awareness and education about the disease and the steps lesbians and bisexual women can take to reduce their risk.
“There is kind of a dearth of research on this issue right now, but the research that is there found that lesbians underestimate their risk level, which is usually a motivating factor in terms of self-breast exams and mammograms,” she said.
Furey also noted that the fear of homophobia often prevents many women from receiving adequate care.
“One of the big barriers to healthcare is the perception of homophobia or heterosexism on the part of healthcare providers,” she said. “If someone is afraid that if they come out to their provider, they’ll have a negative reaction or if in the past someone has had a negative reaction, they’re less likely to seek treatment or screening. We’re not to the point yet where it’s safe to be out everywhere, and that’s a real barrier for a lot of women.”
Kelly Harris, vice president of program and funds development at Gilda’s Club, concurred on the importance of reaching out to lesbian and bisexual women.
“I think it’s really crucial that the community supports this,” she said. “There are so few services for lesbians and bisexual women specifically. We really need people to attend this in part or in whole.”
These issues and myriad others will be addressed throughout the free daylong conference, which will feature a variety of women’s health professionals and advocates.
Dr. Lynn Schucter, director of clinical research at the University of Pennsylvania, will deliver the keynote address to open the conference, and will be followed by a series of morning workshops that focus on such topics as self-advocacy, survivorship issues and nutrition. Participants can also attend support and networking meetings throughout the day.
In the afternoon, director of National LGBTQ Cancer Network Liz Margolis; Pulitzer-nominated author Victoria A. Brownworth; director of the University of Pennsylvania Cancer System Jeanne Rogers; and executive director of Mazzoni Center Nurit Shein will take part in a panel discussion, each bringing her own experiences to the table.
Shein said Mazzoni, which has conducted its own breast-cancer outreach to the LGBT community and provides resources to local lesbians, bisexual and transgender women, helped stage last year’s conference and was eager to get involved again this year to continue to reach out to local women and forge connections among area organizations that are concerned about cancer within the LGBT community.
“We’ve put in place the education, the outreach and the clinical services for the women’s community at Mazzoni, and we’ve found it to be very beneficial to collaborate with other entities who are interested in doing the same,” Shein said. “It’s important to pool our resources together to accomplish all that we can; we have some outreach, Gilda’s Club has some outreach and we can put that together and really have a good collaboration.”
Each panelist will address different aspects of the impact of breast cancer on sexual-minority populations, and Margolis said she hopes to discuss some of the lifestyle factors that could fuel a woman’s risk for breast cancer, such as lack of exercise, poor eating habits, overindulgence in alcohol and smoking. She noted that lesbians and bisexual women also often experience a higher level of stress than heterosexual women, as they must struggle with the stigma associated with their sexuality.
“Cancer in the LGBT community has been hushed and invisible for entirely too long. I think there is some growing awareness because of groups like this and conferences like this, but I don’t think across the country lesbians and bisexual women really understand,” Margolis said. “While we don’t have outcome data to tell us what our actual cancer rates are, it seems to me that increased risks coupled with decreased screenings would result in higher incidence of breast cancer. I don’t want to scare people, but rather encourage them to take pride in their bodies and to take care of them.”
Brownworth, who penned “Coming Out of Cancer” about the epidemic of lesbians with breast cancer, has a particular familiarity with the issue, as she herself is a survivor and was again recently diagnosed with the disease.
Brownworth called the spread of awareness about breast cancer among sexual-minority women “Petri-dish” slow, noting that lingering homophobia on the part of healthcare providers is an inherent impediment to proper care.
“To have to go into the doctor’s office and say, ‘Oh, by the way, I’m a lesbian,’ and then just wait to see how they respond is really hard,” she said. “The first thing doctors ask is if you have children and if you’re sexually active, which are all predicated on this heterosexual paradigm. Women don’t want to have to go into the doctor’s office and feel like they have to come out again.”
Brownworth noted that having a fellow lesbian or supportive friend by your side for the visit often can quell nerves associated with potential homophobia.
“For lesbians to be able to get a friend or a patient advocate or someone who’s also lesbian to go with them, and when they tell the doctor, ‘I have a lump in my breast or something doesn’t feel right, and, oh, I’m a lesbian,’ having that person there can be very important. They can act just as a protective wall and give you confidence.”
Lesbians and bisexual women do not just face differences when they initially seek care, Brownworth noted, but throughout the entire treatment process. She said most breast-cancer support groups operate under the assumption that all women participating are heterosexual, and participants are expected to talk about their disease’s effect on their husbands or children, which she said is a polarizing experience for lesbians and bisexual women and points to the need for lesbian-specific events like that being staged by Gilda’s Club.
“The workshops that Darlene has set up during this conference really demonstrate that she has a keen sense of what’s lacking for lesbians and how important it is to be around other women who are going through the exact same thing as you,” Brownworth said. “When you say that it’s hard to go into a doctor’s office and tell them you’re a lesbian and wait for the other shoe to drop, everyone will go, ‘Yeah, I know what that feels like.’ There’s an affirmation that is so important and can show you that you’re not alone and that other people have lived and are living through the same things as you.”
Brownworth will lead an afternoon workshop on sex and intimacy between women with the disease and their partners. Other workshops will include one that addresses activism and another that looks at the healing power of humor.
Free breakfast and lunch will be served during the day, and the event will wrap up with a free wine and cheese reception and concert by Sweet Namaste.
Gilda’s Club Delaware Valley is producing the event largely through funding received from the Philadelphia affiliate of Susan G. Komen for the Cure.
Elaine Grobman, executive director of the local Komen chapter, commended Gilda’s Club for efforts to shed much-needed light on the disparities in LGBT healthcare.
“The gay and lesbian community has always been important to Susan G. Komen,” Grobman said, noting that she spoke with Shein nearly 20 years ago about the issue of lesbians and breast cancer. “Women need proper assistance and, as a responsible community organization, we want to do all we can to help provide that. Women are women all over the world, and we have to do what we can to help them. Gilda’s Club is a wonderful organization, and we’re very proud to be partners with them.”
Furey noted that Gilda’s Club will continue to expand its LGBT programming and is eager for LGBT cancer patients, survivors and others whose lives have been touched by cancer to seek support from the organization.
“The conference is certainly our biggest event for the community throughout the year right now, but it’s not all that we do or are going to do,” she said. “We really are committed to offering programming for the LGBTQI community that is consistent and supportive.”
For more information about the conference or to register, visit www.gildasclubdelval.org.
Jen Colletta can be reached at firstname.lastname@example.org.