Updated November 20, 2014.

 At a recent LGBT cancer roundtable event, I had the chance to talk to patients and family caregivers in the LGBT community who had been dealing with cancer for five or more years.. I asked what they wanted providers to know and what wisdom they could share with their fellow patients and caregivers, especially the recently diagnosed. Here is some of what they agreed to share for this article. In all cases initials only are used as identifiers.

For providers: “Change the literature! Every brochure I see for cancer services looks like it directed primarily at white, middle and upper class, heterosexual suburban dwellers. Anyone who does not fit neatly into all those categories does not have the same access to resources, even if those resources do exist because the information is not being brought into these community. If we don’t know about the resources, how will we access them? Make the brochures look like us and do special outreach. You know where gay people are, it’s no secret, come to pride at least!” -LT, St Louis, MO, Five year survivor of ovarian cancer

For newly diagnosed: “Don’t believe everything doctors tell you. They have their own biases and their own way of looking at things. But be afraid to ask about clinical trials, but don’t let anyone pressure you either. Ask lots of questions because even (or maybe especially) if you are Medicaid or Medicare, the provider should be working for you. These aren’t specific to LGBT patients of course, but sometimes we’re so scared of the system, we don’t ask all the questions we should”  M.A.

Six year survivor of breast cancer

For providers: “Please quit calling us ‘alternative’. Do not make the mistake of thinking of these communities as alternative. We are only alternative if you consider the minority white nuclear family model as the only valid one and everything else is somehow different or lesser. There is a high percentage of estrangement from family of origin and we have to cobble together nontraditional models of support.”

For caregivers: “I know it’s a cliche, but take care of yourself. When I started going to a therapist at the Cancer Resource Center he told me that the research says that caregivers who take a little time for themselves actually do better in sticking in there, long haul. I think of the little things I do to take care of myself--going to the doctor, or making sure I get enough sleep-- as not detracting from my care of my partner. They add to it” -T.Y, Caregiver to partner who is seven year survivor of Non-Hodgkin’s lymphoma

For providers: “Learn more about LGBT culture so you can use the right words and ask the right questions. Don’t ask me questions [about my status as transgender female] that you could find out with a thirty second google research trip. And realize we have different health practices. Did you realize we are more likely to access complementary healing modalities especially when allopathic medicine is either out of our reach or has failed us?” -T.F., 9 year survivor of colon cancer

For providers: “People who step outside the lines, who talk a little louder or ask the difficult questions are threatening and it might be more comfortable to look the other way. Please do not dismiss our passion for stridency. We are quite literally fighting for our lives and it is your responsibility as a medical provider to help us in that attempt.” -H.M. Six year survivor of ovarian cancer