Having a strong connection with their care team can be crucial for the well-being of LGBTQ+ patients with cancer, as a colorectal cancer survivor and surgeon from City of Hope told CURE®.
Strong, supportive and accepting relationships with their providers are crucial for patients with cancer, particularly those in the LGBTQ+ community, as Tony Christon-Walker learned first-hand.
“I think the key to our overall healing a lot of times has to do with our mental states,” said Christon Walker, who is a Black, gay, HIV-positive colorectal cancer survivor.
“There's a lot that your mental health has to do with how your body heals, how your body responds to trauma,” Christon-Walker said. “And being in an environment that allows you to bring your whole self into the space really helps with better outcomes.”
Approximately 30% of LGBTQIA+ adults don’t seek health care services or have a primary health care provider, a rate three times higher than among heterosexuals, according to study results presented at the 2020 American Society of Clinical Oncology Quality Care Symposium.
“Because the (cancer) journey is so trying, there can be bumps along the road, sometimes things don't end up the way we hope they will end up. It's really important that a patient and their family members trust their care team, that they have faith in their care team. And that that relationship goes two ways, that the patients feel heard,” Dr. Dan J. Raz, co-director of the lung cancer and thoracic oncology program at City of Hope, told CURE®.
“There's oftentimes a lot of choices that need to be made in terms of different types of treatments, goals of treatment. And so I think just that element of trust, being able to communicate openly about what someone really wants, and to make sure that patients really understand what their options are, is so critical in cancer,” said Raz.
“If you're not aware of how we come to your practice with additional risks, concerns and worries, then you're not going to do a good job serving us,” Scout, executive director of the National LGBT Cancer Network, told CURE in 2022.
‘No One Had Ever Even Touched Me’
Walker, who lives in Alabama, began experiencing cancer symptoms in 2013. He felt pain while going to the bathroom, and that pain only got worse over time.
He saw his primary care physician for his HIV diagnosis, thinking he was experiencing internal hemorrhoids — “They should have been used to serving queer people because of HIV and who it effects, they should have been comfortable with serving Black people, but they weren't,” he recalled — and was told to increase his fiber intake. Months later, he was given a steroid cream, also to no effect.
“The next month, they gave me another dose of the same cream that wasn't working. It didn't get any better,” Christon-Walker said. “Because at this point, I'm in pain like all the time, their solution was to numb the pain. In other words, (tell me to) shut up. So, they put me on a regimen of over-the-counter painkillers, alternate ibuprofen and Tylenol just so it wouldn't hurt my kidney and my liver all at the same time.”
Christon-Walker, who was working as a patient advocate at the time, had a revelation. “I realized one day when I was advocating for one of my patients that I do a great job of advocating for everybody but myself,” he said.
A nurse practitioner who was working with one of his patients referred Christon-Walker to her practice.
“When I go in the next morning, the first thing this lady tells me is, 'OK, this might be uncomfortable, I want you to drop your pants because I want to do rectal exam.' And it was at that time, I realized — and this is in July (2014), so after almost nine months of care — no one had ever done a rectal exam on me,” he said. “The more I thought about it, (I realized) no one had ever even touched me, other than doing the chest and cough (check) during my exams.”
It was another two to three months later that, following a deep tissue biopsy, Christon-Walker received his diagnosis. But he pushed back against the speed with which his doctors tried to get him into treatment without a dialogue.
“I got my diagnosis on a Wednesday and Friday, they're like, 'Well, you need to go here to this hospital in Birmingham to get marked for your chemo and all this other stuff.' I'm like, 'Wait a minute, wait, wait, wait, I just found this out the day before yesterday, and now you're telling me we're gonna start treatment on Monday?’ And I was like, ‘I'm not comfortable with this,’” he said.
After seeing television advertisements, Christon-Walker turned to City of Hope Atlanta in November 2014, then known as CTCA, or the Cancer Treatment Centers of America.
“I just wanted some other options … and it was a whole different type of experience,” Christon-Walker said.
‘There’s Still a Lot of Fear’
At City of Hope, Christon-Walker found a patient-centered, empathetic environment where many of the people on staff had their own personal connections with cancer. There was an HIV specialist on staff he could consult about co-managing his conditions, and he said there was never a time when his husband or their son weren’t treated like his family.
“That makes a big difference,” he said. “I participated on a panel at ASCO earlier this year, and it's amazing to me, the number of queer people who don't even tell their doctors that they're queer because they can't bring that part of them into the space.”
“Whenever, as a provider, we go into the room and there's another person or people there, (it's important) to acknowledge them and to also ask, like, what is the relationship?” Raz said. “And my experience also is that even as me, as a gay man, a gay physician, coming in to see a patient, that may not be obvious to some people, but I've had people who are clearly in a same-sex relationship not describe their partner as their spouse and perhaps as a friend.
“There's still a lot of fear just to explain what the role of that important person is with them. So, I think just trying to be to make someone feel comfortable enough so that they can bring their authentic selves, explain who was with them and who's important to them. And maybe not make any assumptions.”
Christon-Walker now spends time as a mentor and supportive peer for the likes of AIDS Alabama and City of Hope’s Cancer Fighters group and, according to City of Hope, was consulted on survivorship and underrepresented populations in cancer as part of President Joe Biden’s Cancer Moonshot Program.
“If (patients) feel safe, I think they should tell their provider if you're married, if you're gay, whenever, that particular part of you,” Christon-Walker said. “Because I mean, right now, let's just be real, we live in a hyper-polarized world in which people will tell you right now (if) they're not cool with that. They will tell you, 'I don't want to support your lifestyle by trying to save your life,' which does not compute to me. But they will tell you and you can get signals from people. If you tell them what your preferred pronouns are, and you're gender non-conforming and they refuse (to respect that), then you don't need to be with that provider.”
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