‘A big unmet need’
Program focuses on gay, bisexual men with prostate cancer left grappling with aftermath of treatment in ways that are rarely appreciated by doctors
CHICAGO — Matthew Curtin learned he had prostate cancer after a routine physical examination in October 2019, when test results indicated there was a problem. A biopsy confirmed the news, and doctors told him that surgery to remove his prostate was the best option.
The surgery went well, and, two years later, there is no indication that the cancer has returned. But for Curtin, 66, diagnosis and surgery were only the beginning of a “clinical and psychological and emotional adventure” — one he felt that many urologists were not equipped to handle, because he was gay and most doctors and their patients were not.
Post-treatment symptoms are similar for all prostate cancer patients, including urinary incontinence, erectile dysfunction, diminished libido and loss of ejaculate. But researchers are finding that those changes may echo through the lives of gay and bisexual men in unexpected, and sometimes more difficult, ways.
The obstacles can be physical and emotional, and may be reflected in patients’ relationships with their partners. And they may present a challenge to medical professionals more attuned to the relationship needs of straight men.
Curtin said he was about three months into treatment when he was struck that “there is a lot going on here — the emotional and psychological effect — that is not being treated.” His doctor’s first response, Curtin said, was, “My office isn’t prepared for this.”
Curtin’s search for a different approach led him to Dr. Channa Amarasekera, director of the Gay and Bisexual Men’s Urology Program at Northwestern Medicine in Chicago. The program, which began taking patients in August, is the first of its kind in the United States, and Amarasekera, who has focused his career on urologic care for gay and bisexual men and other sexual minorities, is the program’s first leader.
It is an emerging field of study driven in part by the increasing number of prostate cancer patients who identify as gay or bisexual. “Historically, the medical system has sort of operated in a don’t-askdon’t-tell environment, and that’s been problematic,” Amarasekera said. “Fortunately, that’s changing. Patients are increasingly open about who there are.”
The gay and bisexual men in their 50s and 60s who are now entering the prime demographic for prostate cancer also lived through the worst of the AIDS epidemic. That experience has left many of them more experienced in dealing with the medical establishment — and more distrustful of it.
“It’s important now to reassure patients who came of age through that time that things are different, and they can expect better care,” Amarasekera said.
The problem, experts in the field say, is that the research about gay and bisexual men and prostate cancer is still woefully inadequate.
“Historically, most of the research on gay health was focused on HIV and in young gay men, because that was the biggest killer,” said Simon Rosser, a professor of epidemiology and community health at the University of Minnesota, who led a 2017 study of gay and bisexual men with prostate cancer.
“It’s only now that as the AIDS generation grew older, and aged into health problems like prostate cancer, that specialists are starting to see gay patients,” Rosser said. “But they have not trained in sexual minorities and health care.”
Dr. Edward Schaeffer, chair of the urology department at the Feinberg School of Medicine at Northwestern University and chief of urology at Northwestern Memorial Hospital, said he sensed the importance of a new approach about three years ago.
“I felt it was a big unmet need,” said Schaeffer, whose work has focused mostly on the disparities among men with prostate cancer, particularly between Black men and others. So he created the program with Amarasekera.
Many of the men Amarasekera sees at the program’s two clinics are unprepared to face yet another health crisis. Among them is a 59-yearold lawyer in Chicago who is Hiv-positive and said he was not fully warned about how the removal of his prostate would affect his body.
“There is a wasting,” said the lawyer, who asked not to be quoted by name because not all of his relatives were aware of his
HIV status. The health care system, he said, “marginalizes gay men, particularly when it comes to sexual health, and the prostate is so linked to sexual health in gay men. It’s a sexual organ, and it’s been removed.
“A previous urologist simply said, ‘Go forward and enjoy your life, and bye,’ ” the lawyer said.
Gary Dowsett, emeritus professor at the Australian
Research Centre in Sex, Health and Society at La Trobe University in Melbourne, said such treatment, while not meant to be callous, is not uncommon. It’s just that many urologists don’t realize that the prostate is “kind of a male ‘G spot,’ ” and gay men more often are aware of it.
Schaeffer and Amarasekera said the information gathered through the Northwestern program would benefit urology as a whole. After all, straight men, too, often are distressed by the sexual consequences of treatment and feel that they were not adequately warned.
The Chicago lawyer said his experience with the program “goes a long way to address the mistrust that many gay men feel toward medical institutions.”
He is still together with the man he began dating right before his diagnosis, and they are planning a wedding. Sex remains a “tremendous pleasure,” he said.
That’s the outcome Amarasekera wants for all his patients.
“After treatment, many men with prostate cancer focus on the warmth in their relationships rather than the heat,” he said. “We’re here to say: ‘Yes, it’s important to pay attention to the warmth. But the heat isn’t over. We can still get you back.’ ”