Second in a three-part series on LGBTQ men’s health.
A national survey by Cleveland Clinic reveals that 72% of men would rather do household chores than go to the doctor. Even for men who take their health more seriously (and many gay, bisexual and men who have sex with men (MSM) do) some are holding back: 20 percent of men admit they have not been completely honest with their doctor about their health issues.
The survey was part of Cleveland Clinic’s educational campaign, “MENtion It®,” which “aims to address the fact that men often do not mention health issues or take steps to prevent them.” Only half (50%) of men surveyed said they consider an annual check-up a regular part of taking care of themselves.
Dr. Eric Klein, chairman of Cleveland Clinic’s Glickman Urological & Kidney Institute said, “Men tend to be stubborn about a lot of things, with taking care of their health usually near the top of the list. Our hope with this campaign is that by shedding a little light on what barriers are keeping men from engaging in preventative care, we can then work to motivate them to take their health more seriously.”
Benjamin Ryan, 43, and Michelangelo Signorile, 62, are men who take care of their health — eating well, working out and having those regular check-ups. Each spoke at length with PGN about their individual cancer experiences. They talked about their diagnosis process, treatment and recovery. These are men who did everything right to take care of their health, including getting regular check ups. Cancer still found them. And the cancers they each went through, and the process each man undertook to find and access treatment, was demanding. As investigative journalists, both knew how to do that research. As New York City residents, they had more access to top-tier hospitals and cutting-edge medical care than most people.
That is not the case for many men, and even less so for most gay, bisexual and MSM men. The National Cancer Institute notes that certain U.S. populations — Black, Latinx and Native Americans — “have not benefited equally from the advances against cancer.” Black men are at higher risk for cancer than their white peers and are more likely to get cancer at a younger age — and to die.
Cancer is a roulette wheel in America and there are only two slots, getting cancer or avoiding it. Half of all Americans will get cancer in their lifetimes. In 2022, there were 1.9 million new cancer cases diagnosed and 609,360 cancer deaths in the U.S. Prostate, lung, and colorectal cancers account for an estimated 43% of all cancers diagnosed in men in 2021. While these are the most common cancers for men, there are more than 200 different types of cancer. Among men who have sex with men, the incidence of anal cancer is significantly more prevalent and increasing annually. Gay, bisexual and MSM men are at higher risk for certain kinds of cancer, like anal cancer, which a new study released in the Journal of Clinical Oncology shows is on the rise.
Yet there is very little discourse in the media on men and cancer. There is no race for the cure, no pink ribbons, no buildings lit up at night. And no discussion from men themselves of what it is like to go through cancer diagnosis and treatment. Most men are unaware that they should get a regular PSA (prostate-specific antigen) test or check their testicles and scrotum monthly for any irregularities or get a rectal exam when they have their annual check ups.
When Signorile’s PSA test was elevated, his doctor monitored it. The numbers continued to rise, but an ultrasound showed nothing. “That’s when I got the biopsy in my doctor’s office,” Signorile explained. “I should have been able to get an MRI first, to rule out a tumor — but my insurance wouldn’t pay for it because everything except the slightly-elevated PSA was normal. So, I wasn’t sick enough to find out how sick I was — one of the main problems with insurance in this country!”
He said, “The biopsy, for me, was quick and not painful. In the urologist’s office, local anesthesia. Just some pressure, done in 15 minutes.”
The two-week wait for the pathology report “was among the worst two weeks of anxiety I’ve ever had,” Signorile said. “And then when the doctor called with the news my heart sank. I was terrified my life was going to dramatically change, only having read some of the worst-case scenarios online. My urologist explained it was found early and showed my husband David and me precisely where it was limited to in the prostate.”
Signorile’s urologist detailed treatments such as surgery to remove the prostate and surrounding areas, including lymph nodes and seminal vesicles, or radiation, of which there are several types. Either surgery or radiation may also include androgen-deprivation therapy, depending on how advanced the cancer is.
Ryan is the son of a surgeon. He has written extensively in the mainstream and queer press about health-related issues and was editor at large at HIV Plus and at POZ magazine, as well as Hep and Cancer Health. Ryan said, “I’ve spent my career covering other people’s health problems, then I went from reporting on cancer to diagnosis.” Seminoma is a form of testicular cancer. He was initially diagnosed with a Stage 1B seminoma in December 2021, and then a Stage 2B seminoma a few months later. Ryan had surgery for his initial diagnosis, then, when his cancer recurred, he underwent chemotherapy.
A theater maven who raised money (while undergoing his own treatment) for Broadway Cares/Equity Fights AIDS, a nonprofit organization that raises funds for AIDS-related and other health causes, Ryan peppered his cancer story with theater and film analogies and references. A few of his worst moments happened at or on the way to the theater.
The experience of his diagnosis, recurrence and treatment was intense and at times brutal, both physically and emotionally. Like many cancer patients, Ryan loved getting check-in texts from friends, but was ghosted by others. He details how some friends stopped asking how he was altogether and others checked out — a common issue faced by cancer patients. “I say I lost five friends to cancer — mine,” he says wryly.
He also found as he went through attempting to get treatment at a hospital nearby that one of the worst experiences should have been among the simplest: getting his records transferred from one system to another. The process was an “abject nightmare,” he said. After arguing on the phone with one records department, he went in person to explain that he knew his records were there because he’d been in the hospital. Ryan said soon he was “Shirley MacLaine in ‘Terms of Endearment,’ screaming at the counter.” He said he was “left a distraught mess by the strain of this grueling endeavor” and “I went home and cried for an hour. It’s not right that anyone has to go through this,” he said.
Ryan endured 10 weeks of chemo with a series of drugs that left him with dizziness, disorientation and brain fog and the “feeling of being poisoned.” He had significant fluid retention that made it hard to walk, as well as headaches. His hair loss was immediate, so he shaved his head. He was also weak, with sores in his mouth and the relentless metallic taste that many chemo patients get. He joked that there has to be some link to the “Altoid lobby,” as he searched for things to vitiate the foul taste.
But Ryan said that throughout he never worried he would die, and that he thought the treatment he began in May 2022 would take care of the cancer and he would get his life back.
Signorile chose not to get prostate surgery, which is, he said, a viable option now. “The side effects of surgery, both short-term and possibly long-term, are greater, regarding both sexual function and urinary issues. Straight men, gay and bisexual men and transgender women have very different priorities and sexual realities,” he said.
Signorile said, “In January of 2022 I underwent low-dose brachytherapy — otherwise known as radioactive seed implants — a minimally invasive out-patient procedure with a success rate of well over 90%. You’re in and out within a day.”
He had “sixty-six radioactive seeds placed inside my prostate under general anesthesia; the oncologist is guided by real-time CT scan and MRI. The radiation isn’t dangerous to anyone and decays fully in a matter of months.”
Four months later, Signorile’s PSA plummeted, and his oncologist “considered the treatment a success, but of course we monitor every few months and we all know recurrence is a possibility no matter how small it might be.”
He said, “Radiation has short-term and possible long term effects too, including affecting urinary and sexual function, even if more minimally than surgery.”
Ryan continually made points about the emotional and psychological impact of cancer during his interview with PGN. He talked about his hair loss, changes in his skin, weight gain and edema. These are issues we read about for women with cancer, but nowhere is there literature for men on these aspects of diagnosis and treatment. Ryan said, “Doctors don’t seem to think that men will be too concerned over how chemo will impact their looks, but that’s not the case.”
In 2020, at the beginning of the pandemic and nearly two years before his diagnosis, Ryan wrote a long article for The Guardian on a new study exploring “the unique stressors faced by gay and bisexual men and the corrosive effects of status consciousness, competitiveness and racism within the gay community itself.” The study has real-world implications for men facing cancer and treatment.
For Signorile, having as much data as possible was key to addressing his cancer. He consulted “gay patient advocates and went online to HealthUnlocked to the prostate cancer threads and forums, one in particular, for ‘Prostate Cancer and Gay Men.’ One piece I suggest every gay and bisexual man read is ‘Gay Men Should *Never* Get a Prostatectomy,’ by respected patient advocate Allen Edel, whose site is also a wealth of information and links to important data and studies.”
Signorile and Ryan went public with their diagnoses and experiences to help demystify cancer and to spur other men to get checked and to go to the doctor regularly.
“Cisgender men in general in our society often don’t pay attention to their health, or get regular screenings. A lot of it is tied in with a kind of macho bravado and fear of finding weakness — including physical weakness,” said Signorile.
While his cancer is less common, Ryan said, “Paying attention to your body is key.” He said if something feels wrong, get it checked out.
The American Cancer Society and the National Cancer Institute both assert that smoking (gay men smoke nearly twice as much as their straight peers), more sedentary lifestyles, and less-healthy eating habits are contributors to cancer. NCI says “Highly processed foods, sugary beverages, obesity, Type 2 diabetes, sedentary lifestyle, and alcohol consumption have all significantly increased since the 1950s” and play a role in cancer risk as well as other health problems like stroke and heart disease.
For more information on cancer risk, visit the American Cancer Society or the National LGBT Cancer Network.
Next week, we’ll explore how men of color face unique health challenges.