FIU professor’s Rainbow Survivor Network offers support to LBT women with cancer
A social support network aims to help lesbian, bisexual and transgender women get through cancer.
05/23/2014 12:00 AM
05/24/2014 11:56 PM
When Helen Calvit found out she had breast cancer, she was alone.
But when it came to fighting the disease, she was fortunate enough to have the support of her partner and mother.
In 2006, Calvit underwent a routine mammogram. Calvit, 58, a special agent with the federal Department of Customs and Border Protection, had led a healthy life so she didn’t expect any surprises.
“I was 50 years old and had never been to an emergency room,” Calvit said.
When her doctor told her the news, Calvit was alone and afraid. She walked out of the clinic, leaned against a garbage can and started crying. She immediately turned to her partner, Rhonda Wardlaw, and her mother to get her through the treatment, which included a mastectomy of her right breast and about six reconstructive surgeries.
“Having my partner and my mother through everything, I just felt that I was extremely fortunate,” she said.
But not all lesbian women have someone to be there for them.
Nan Van Den Bergh, a professor at FIU’s School of Social Work, recognized there was a void in the social support for many lesbian women, who often are estranged from their families because of their sexual orientation. Bergh, 66, is a breast cancer survivor herself; she is also lesbian. To fill the gap, Bergh created a one-to-one buddy group called the Rainbow Survivor Network, where lesbian, bisexual or transgender women who are newly diagnosed with cancer can be paired up with a survivor so she doesn’t have to go through the experience alone.
“Lesbians are more likely to get their cancer support from a friend than family,” said Van Den Bergh.
Van Den Bergh, the founder of Area Resources and Referral Organization for Women (ARROW), noticed a need for a support system where LBT women can speak with other LBT women about their experience with cancer.
“People are most comfortable with their own kind, because then you don’t have to edit what you’re saying,” Van Den Bergh said.
Because LBT and heterosexual women have different concerns when dealing with gynecological cancers, i.e., LBT women may not be as upset if they can no longer reproduce as a result of cancer, separate support groups are needed, Van Den Bergh said. Also, she noted, some heterosexual women may not be as open to discussing LBT issues. And the last thing any woman going through cancer needs is to sense that someone isn’t comfortable helping them, she added.
Lesbian and bisexual women are more likely to get breast cancer than heterosexual women. None of the factors have to do with the women’s sexual orientation. According to the National Cancer Institute, women who breastfeed have a decreased risk of getting breast cancer. In fact, the chances become slimmer with every 12 months a woman breast feeds, and with each child she has.
Other factors have nothing to do with biology. Because lesbian women don’t have the need for oral contraceptives, they don’t see their gynecologist as often as heterosexual women. Reproductive health is many women’s main link to the healthcare system, and when they go in for routine visits, other issues are frequently addressed, including clinical breast exams, mammograms and pap smears, all of which allow for the early detection and early treatment of the cancer.
But going to the doctor is expensive, and according to the American Cancer Society, there are lower rates of health insurance among lesbian women than heterosexual women because insurance policies often don’t cover unmarried partners.
Jamie Bendola, 29, of Miami Beach was one of these uninsured women when she discovered she had ovarian cancer.
When Bendola was 25, she sensed something might be wrong. But since she didn’t have health insurance, she put off going to the doctor, until one day she finally just went to the emergency room.
“The only good news I can tell you is that if it is in fact cancer, the good news it doesn’t look like it has spread anywhere,” Bendola said the doctor told her that day.
He was wrong. It was ovarian cancer and it had spread, and Bendola had to have a hysterectomy.
Bendola said that she didn’t have anyone to talk to about her experience. It wasn’t due to her sexual orientation, but rather her age: She was so much younger than most women who have ovarian cancer.
“I’m joining the buddy network not because it’s strictly for lesbians,’’ she said.
She’s joining so she can serve as a young survivor and mentor to someone else who might be in her shoes.
Join the Discussion
Miami Herald is pleased to provide this opportunity to share information, experiences and observations about what's in the news. Some of the comments may be reprinted elsewhere on the site or in the newspaper. We encourage lively, open debate on the issues of the day, and ask that you refrain from profanity, hate speech, personal comments and remarks that are off point. Thank you for taking the time to offer your thoughts.