Gay Men and Prostate Cancer: ‘We Can Get Them Back’

Matthew Curtin learned he had prostate cancer after a routine medical examination in October 2019, when the test showed there was a problem. A biopsy confirmed the news, and doctors told him the best option would be surgery to remove the prostate.

The surgery went well, and two years later there is no evidence that the cancer has returned. But for Curtin, 66, the diagnosis and operation were just the beginning of a “clinical, psychological, and emotional adventure” — one he felt many urologists weren’t qualified to treat because he’s gay and most doctors and their patients they are not.

Symptoms after treatment are similar for all prostate cancer patients, such as urinary incontinence, erectile dysfunction, reduced libido and loss of ejaculation. But researchers are finding that these changes can reverberate in the lives of gay and bisexual men in unexpected, and sometimes difficult, ways.

Obstacles can be physical and emotional, and affect patients’ relationships with their partners. And they pose a challenge to medical professionals more knowledgeable about the relationship needs of heterosexual men.

​Curtin said he was about three months into treatment when he realized that “there was a lot more going on — the emotional and psychological effect — that weren’t being treated.”

His doctor’s first reaction, 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 Male Urology Program at the Northwestern University School of Medicine in Chicago. The program, which began serving patients in August, is the first of its kind in the United States. Amarasekera, who has focused his professional career on urological treatments for gay, bisexual and other sexual minorities, is the program’s first director.

It is an emerging field of study, driven in part by the growing number of prostate cancer patients who identify as gay or bisexual. “Historically, the medical system has more or less operated on a ‘don’t ask and don’t tell’ scheme, which is problematic,” said Amarasekera. “Fortunately, this is changing. Patients are increasingly open about who they are.”

Gay and bisexual men in their 50s and 60s who are entering the group hardest hit by prostate cancer have also experienced the worst of the AIDS epidemic. This experience has made many of them more experienced in dealing with the medical environment—and more suspicious of it.

“It is now important to reassure patients who have matured at this time that things are different and they can expect better treatment,” said Amarasekera.

The problem, according to experts in the field, is that research on gay and bisexual men and prostate cancer is still woefully inadequate.

“Historically, most gay health research has focused on HIV and young men because it was the hardest hit group,” said Simon Rosser, professor of epidemiology and community health at the University of Minnesota, who led a 2017 study of men gay and bisexual men with prostate cancer.

“Only now that the AIDS generation has matured and is facing problems like prostate cancer are specialists starting to see gay patients,” said Rosser. “But they are not trained in sexual minorities and health care.”

Dr. Edward Schaeffer, chair of the department of urology at Northwestern University’s Feinberg School of Medicine and chief of urology at Northwestern Memorial Hospital, said he felt the importance of a new approach about three years ago.

“I felt it was a huge unmet need,” explained Schaeffer, whose work has focused primarily on disparities between men with prostate cancer, particularly between black men and others. So he created the program with Amarasekera.

Amarasekera studied the training of urologists and found that many reported receiving less than five hours of instruction in treating gay and bisexual patients. He also surveyed gay patients, who generally said that their sexual satisfaction was not adequately taken into account during treatment for prostate cancer.

“It is important to collect data on how treatment affects sexual function differently for gay and bisexual men, who have different sexual repertoires than heterosexual men,” he said. “If you don’t have the tools to measure aspects of sexual function that are specific to gay and bisexual men, you miss an opportunity to track your progress.”

Many of the men Amarasekera sees at the program’s two clinics — one in downtown Chicago and the other in the historically gay neighborhood of Northalsted — aren’t prepared to face yet another health crisis. One of them is a 59-year-old Chicago lawyer who is HIV-positive and said he was not fully warned about how removing his prostate would affect his body.

“It’s devastating,” said the lawyer, who asked that his name not be mentioned because not all of his relatives know he has HIV. “There is a feminization of the body, a shrinking of Organs genitals.”

The health care system, he said, “marginalizes gays, especially when it comes to sexual health, and the prostate is very much linked to gay men’s sexual health. It’s a sexual organ, and it’s been removed.”

“A former urologist simply said, ‘Go ahead and enjoy your life, and goodbye,'” the lawyer said.

Gary Dowsett, professor emeritus at the Australian Research Center on Sex, Health and Society at La Troube University in Melbourne, said such treatment, while not purposefully insensitive, is not uncommon. Some urologists just don’t realize that the prostate is “a kind of G-spot,” and gay men often know this.

“If they don’t understand the role of the prostate in sexual pleasure, it’s rarely a priority discussion,” said Dowsett, who has survived prostate cancer, of urologists. “The focus is usually on continence and erections, as if sex starts and ends there.”

Schaeffer and Amarasekera said the information gathered by the Northwestern program will benefit urology as a whole. After all, straight men are often also distraught by the consequences of treatment and feel they have not been properly warned.

“When you don’t ask the right questions or don’t counsel patients about the potential impacts of treatment relevant to them, you basically don’t allow them to make an informed decision,” said Amarasekera. “This can cause resentment, and understandably, if they experience side effects from the treatment.”

Schaeffer said he hoped the program’s approach to urological health for gay men “starts in big cities and then spreads.”

Prostate cancer patients are not the only focus of the program. “I see it expanding and being a place for gays to seek urological care in general,” the doctor said.

The Chicago lawyer who is being treated by him said his experience with the program “helps a lot to alleviate the distrust many gays feel toward medical institutions.”

He is still with the man he started dating shortly before his diagnosis, and they plan to get married. Sex remains “tremendous pleasure,” he said.

This is the result Amarasekera wants for all his patients.

“After treatment, many men with prostate cancer focus on the affectionate part of the relationship rather than sex,” he said. “We’re here to say, ‘Yes, it’s important to take care of the affection. But the sex isn’t over. We can still get it back.”

Translated by Luiz Roberto M. Gonçalves