Online Support Groups Help LBT Breast Cancer Survivors

In an effort to help lesbian, bisexual and transgender breast cancer survivors across New York state, the National LGBT Cancer Network has initiated an online forum and support group that can help those who may find it difficult to attend evening support groups or access community support.

"This allows people to log on from home, which is great if they are in chemo and exhausted, or have family responsibilities," said Liz Margolies, LCSW, Executive Director of the National LGBT Cancer Network. "It is also great for people who are geographically isolated, or who have visual or cognitive difficulties. It allows us to reach people we wouldn't be able to reach otherwise."

The support groups are free to join, but candidates must go through an intake interview to make sure that it is a good fit for them. If not -- for instance, if someone newly diagnosed wants to join a group of long-time survivors -- they will be referred to a local provider via a partnership with CancerCare.

"We found from our research that tailored support groups were the top request for survivors," said Margolies. "They didn't feel comfortable expressing the impact of cancer and chemo on their relationships, lives and families in mainstream groups, where many felt silenced and unwelcome."

Some topics that lesbian, bisexual and transgender breast cancer survivors face do not naturally arise in a mainstream support group. Examples of this include whether it is safe to come out to healthcare providers: a decision that LBT people make multiple times throughout their treatment to X-ray technicians, phlebotomists, doctors and nurses.

"Everyone wants to talk about how to decide if it's safe to talk about the decision they made," said Margolies. "This is a forum for lesbian and transgender cancer survivors to talk about the impact of their cancer treatment on their sexuality and relationships."

Margolies said that other LBT-specific issues include the pressure for gender conformity within the world of cancer, especially regarding the issue of breast reconstruction, which transgender survivors may want, but butch lesbians may not. The proliferation of the color pink in the breast cancer movement may also be off-putting to some women, who may feel pressured to "need to be happy, to be feminized, to think positive and wear pink," said Margolies.

Support will be available in two formats: a 24-hour online forum for transgender breast cancer survivors, and real-time online support groups for lesbian and bisexual women.

"If we have people in the profession with the interest to lead a real-time trans only group, we are absolutely open to starting such a group," added Margolies. "For now, we want trans individuals to have other breast cancer survivors to discuss experiences with and ask questions to."

The National LGBT Cancer Network will have expert psychotherapists to lead the online group, which functions like an old-fashioned chat room. Margolies and her team are currently interviewing candidates for the group, and will launch the first group within the next month, or as soon as they have 14 members. The groups will meet for eight weeks, and then take a two-week break. Members can decide whether to join the next group, or not. Margolies said that the interim would give the Network time to evaluate what works and what doesn't.

The support group is possible thanks to a grant from the New York State Department of Health. Enrollment is thus limited to people within New York State, although Margolies said that she hoped that people who really needed it would be able to gain access, and was determined to reach out to everyone who asked for services.

"I want this to be a place where people can talk about their real experiences," said Margolies.