A professor at the University of Windsor has spent the past two years researching the experiences of cancer care for members of the LGBTQ community, and hopes that a new survey will help paint a broader picture about why those experiences may differ from the norm.
The the Compassionate Cancer Pride survey is open to LGBTQ individuals in Windsor-Essex, Chatham-Kent and Sarnia-Lambton who have survived cancer, are currently in treatment for the disease or know someone who has had an experience with it.
Backed by $30,000 in funding, with support from the Research Ethics Board and the Windsor Regional Hospital, the study opened in August.
Participants are encouraged to share details surrounding their experiences going through the local health-care system in regards to their cancer care.
Research lead and nursing professor Kathy Pfaff is not a member of the LGBTQ community herself, but says that early findings from her research show there is a need for a more inclusive approach, particularly when it comes to aspects of after care when someone receives a cancer treatment like chemotherapy.
"There is mounting evidence about the dangers of social isolation, and certainly we know this in general," she said. "But we also know that cancer is a very socially isolating diagnosis for many people."
Pfaff says the research literature points to instances where LGBTQ individuals may feel further marginalized and stigmatized within the care system, a factor that may be emphasized when cancer comes into play.
"That [cancer] journey can be very lonely for many, and we were interested in seeing what we could do to help people feel as though they're supported on [that] journey."
Pfaff says that support for the LGBTQ community in this context is "not necessarily the size of someone's network of support, but the quality of that network." She hopes the study will illustrate that people with stronger social support can have better health outcomes, and suggests this may be an option needed for the LGBTQ community specifically.
Robert Franz is the director of the Windsor Symphony Orchestra, a gay man who experienced cancer himself in the fall of 2021. He heard about the survey during his own treatment through Dr. Caroline Hamm, an oncologist at the Windsor Regional Hospital who is also assisting with the study.
"I think the idea of doing this study is brilliant," he said.
"There is a period afterwards, the recovery period, where you do kind of get left on your own. As brilliant as the [cancer centre] is with the actual treatment of the disease, that aftercare period is very interesting."
Franz made a full recovery from his non-Hodgkin's lymphoma, partly due to chemotherapy from November 2021 into March of 2022, and an immunotherapy drug that worked specifically with his type of cancer.
Though Franz recovered, he also recently lost a friend to the same type of cancer.
"I was fortunate," he said. "But there is something to be said about the challenge of seeing other people go through it and not be successful."
"I wouldn't call it survivor's guilt, though maybe that's what it is. But there is an element of, 'wow, that was close.'"
Franz says that surviving the experience has made him more open to being a listening ear to others in the LGBTQ community, since it's something he can relate to.
In terms of Franz's identity as a gay man and how his experience may have been different, he says that though the survey is an important and interesting thing to do, he believes his identity didn't really play into it, even though he sees how it could.
"They did do a lot of HIV tests for me, and I think they were concerned with my immune system being compromised if I became infected over the course of my treatment," he said.
"But, nobody ever said that's why they were doing it, and I can't imagine that's a typical thing they do for everybody."
Despite this, Franz also said his sexual orientation may have played a positive role in his treatment.
"At the end of my first treatment, one of the nurses came in and sat on the edge of my bed and said 'So I'm going to tell you what to do and what not to do."
"She laid out not only food things I should think about, but also ways to have sex safely, which I thought was really, really outstanding. I don't know if they would do that for all populations, but I was very appreciative of that."
Pfaff's hope with the study is to start locally and hopefully develop a system that can be implemented more widely for LGBTQ members to know there are options for additional support if it is needed.
"We're going to develop a toolkit, something we will implement here, trial it, pilot it and then look for opportunities to actually scale it and spread it."