Prostate cancer isn't just a research topic for B. R. Simon Rosser, PhD, MPH. It's personal.
Rosser, a pioneering researcher in HIV and LGBT health at the University of Minnesota School of Public Health in Minneapolis, was diagnosed with low-risk Gleason 6 prostate cancer in 2016, at the age of 57, and went on active surveillance. His own father had been diagnosed with early-onset, aggressive prostate cancer at age 62 and died 6 years later.
"My older brother and I, every year on the anniversary of our father's death, would get tested for prostate cancer. And so, I happen to be one of these people who has charted his PSA's for about a decade before I was diagnosed. And every year it was sort of inching up to 3.19, and then in 2016, I came in and suddenly it had jumped to 5.09," he said.
Rosser's husband is also a prostate cancer survivor. "Bill was diagnosed about 5 years before me and had a radical prostatectomy. When I saw the sexual and incontinence effects of treatment, and its impact on our sex life, that's when I started researching sexual and urinary rehabilitation for men like us," he said.
To his knowledge, there was nothing in the scientific literature about gay and bisexual men and prostate cancer in the 20th century. The first tiny studies didn't appear until 2001, he said.
The public health researcher, who is also the co-editor of the 2018 book, , received $2 million in funding for the first large study from the NIH in 2017 to look at how prostate cancer affects gay men and how their urologists treat gay men with prostate cancer.
The research is eye-opening for patients and doctors, for straights and gays alike.
Rosser said he has found urology to be "incredibly heteronormative," meaning those in the field tend to just assume everyone is or should be straight.
Indeed, new research confirms this. In a of 112 urologists in the U.S., most providers said they do not ask about sexual orientation, are more comfortable discussing sex with heterosexual patients, lack knowledge about sexual minority patients, and feel inadequately trained in sexual minority healthcare.
Rosser said talking to patients may not be most urologists' strong suit: "A field that is so dominated by men will do some things that may be off-putting to sexual minorities." The American Urological Association recently reported that for the first time of urologists are women.
Rosser continued: "So, we heard participants in our study say their first visit to the urology clinic felt like stepping into a men's locker room. In the waiting room, the television is on a sports or conservative channel, the magazines are about sports, the men waiting are all silent. It was so heteronormative that anyone who is not heterosexual or a jock may feel alienated."
The research shows many urologists do not want to discuss sexuality with straight or gay patients.
I can vouch for that as a straight man with low-risk prostate cancer who has seen several urologists over the past decade. My first urologist, a young man in his 30s, wanted to rush me into surgery and "cure" my low-risk prostate cancer. It was 2010, and he, like most urologists, then rejected active surveillance. That's why I got a second opinion.
When I broached sex issues with another urologist, he preferred not to respond to my questions and deferred to a specialized nurse practitioner at another hospital who he said a lot of urologists found to be helpful in that department.
Rosser said: "I don't mean to be unfair, but a bunch of urologists think, 'I've done my job if I do the best surgery for each patient.' I suspect they are also the ones who feel comfortable writing out a prescription for a Viagra, and they think that that's done something for erectile dysfunction."
I have filled in a questionnaire on sexuality at each visit to yet another urologist. The questionnaire is never discussed during the exam. Maybe the data is used for research? I'll have to ask.
Rosser said a commonly used form is the Sexual Health Inventory for Men, which contains six or seven questions that many gay men find they can't answer.
"The questions are all about what happens when you put your penis into a vagina, or put it into your partner if they use the non-sexist version. Either way, that assumes that you are the insertive partner. It asks no questions about what happens if you're the receptive partner. It asks no questions about oral sex, which is far more common," he said. "And literally, the doctor comes away with an impression that they have looked at sexual functioning when they haven't. They've only looked at one component of sexual functioning."
Rosser said urologists and oncologists along with primary care physicians need to take at least a brief sexual history with all patients.
"Typically, your primary care physician takes a sexual history as part of a more general history when getting to know a patient. We know that about 80% to 85% of gay men are out to their primary care physician," he said. "That drops to less than half being out to their prostate cancer urologists. So that's a big difference. And it's mainly because the primary care physician asks while the urologist doesn't."
Rosser said science and patients benefit from research being done on a variety of populations so comparisons can be made and lessons learned, such as comparing gay and straight populations.
Success in HIV Opens Door for New Areas of Research in Gay Men
Rosser remembers his first interview with a teenager who had been diagnosed with AIDS.
"I asked him what he wanted for his life. And his goal was to reach the age of 20, to live until 20. He had become infected from his first sexual encounter -- the poor kid," said Rosser.
Rosser has been involved with HIV/AIDS research and care since 1983, when as a psychology undergrad he first read of a mysterious disease in a local newspaper in Auckland, New Zealand. He would later help found the New Zealand AIDS Foundation.
He has been part of an amazing metamorphosis of HIV/AIDS from a certain death sentence to a chronic disease that patients with proper care can live with.
"In 1995, you had the HIV epidemic in the era of effective treatment. And starting in about 2010, we're in the current era where we're talking seriously about eradication and cure. And that's where the energy is at the moment. Can we get the world to a point where there are no or very few new infections?" he said.
Flash ahead to 2021.
The men who survived with HIV/AIDS from the early days are now living into their 60s and beyond, and face another major sexual health challenge: prostate cancer. But research on the disease in this specific group is limited too.
"Now that we're in a period of eradication of HIV/AIDS, we can actually pause long enough to say, well, what are the other problems in gay men that we never got around to looking at? And prostate cancer becomes one of those," Rosser said.
Research Findings
Gay and bisexual men experience worse mental health and greater depression after diagnosis of prostate cancer, according to Rosser's research.
"That's consistent with a whole range of literature that says that because of minority stress, that gay men may have worse mental health in general. And so that's going to be reflected in the population statistics. So that was expected," he said.
Gay men experience better sexual function after prostate cancer treatment. "Are gay men doing something different after prostate cancer treatment? They may masturbate more. They may be more interested in restoring their sexual function. They may be more committed to it. They may be out and dating more. There's a whole bunch of reasons why that penis may be getting more stimulation. And that could explain why their erections are better after treatment than heterosexual men," he said.
Also, gay men have more sexual options after treatment. "What we saw in our qualitative work is that if one guy isn't functioning sexually in a couple, they've got the option of at least trying to see what happens if we reverse roles. So, if my erection isn't strong enough to be the insertive partner, I'll try being the receptive partner. Experimentation with roles in sex works for some men but not for others," he said.
He said most wives in traditional heterosexual marriages "aren't going to say, 'Well, why don't I try being the insertive partner and I'll use a dildo on you.' That's not what most wives do."
In contrast, he said, there may be a subgroup of heterosexual men who scored worse sexually because they're not interested or comfortable in engaging in rehabilitation. He said some straight men opt to suffer in silence possibly because they no longer have an active sex life with their spouse.
Rosser also found that gay men may function better than straights in terms of sexuality, but they do worse with incontinence, the other major risk following radical surgery.
Rosser said, "My best guess is that this may be related to gay men having more oral sex with more partners. One of the biggest myths in prostate cancer is that patients are old and asexual. Half of the gay men in our samples are single, and over 90% of our participants report some sexual activity, alone or with a partner. If they're going to have sex on a casual date, it's likely to be oral. And if problems with urinary arousal incontinence or climacturia at orgasm are going to cause problems, then, it could be a bigger concern."
He continued: "Or it could be something that we really don't know, and we need to go back and do some qualitative research to find out what's going on, but it's a very -- it's a reliable finding. So, I think it's true. We just don't know what's causing it yet, which is why we need to do more research."
An Opportunity for More Research
Straight or gay or bisexual, prostate cancer is a complicated disease with a mix of physical and psychological factors. It stigmatizes because of a combustible combination of sexuality and cancer issues.
Transgender women who have undergone transformative sexual surgery face another layer of issues since they retain their prostates as women. They are subject to embarrassment and harassment as medical office staff ask for their birth names or classify them as men rather than asking about their gender identification.
In a heterocentric culture, it is difficult for those who are non-heterosexual to be seen and heard. Doctors and their staff need to learn to be sensitive to these differences.
Rosser said: "The biggest thing is gay men just don't want to be made invisible. They don't want people to assume that they're straight, and that's the biggest problem that they come in and they end up feeling devalued, ignored and that no one's listened to their experience."
And Rosser said research on gays and prostate cancer, just like in the heterosexual world, has focused on men who have undergone surgical treatment and face risks of impotence and incontinence.
I'll throw this in: men like Rosser and me who are on active surveillance for low-risk to favorable-intermediate-risk prostate cancer often are lost to research. We now are a largely invisible majority among men diagnosed with prostate cancer.
We are part of a population ripe for research.
Howard Wolinsky is a Chicago-based medical freelancer who has written this blog about his cancer journey for ľֱ since 2016. He is the author of the just-released book, .