Gay and bisexual men with HIV have high rates of anal cancer—yet we don’t talk about it enough. Here’s how one man survived a disease that may be highly preventable with the HPV vaccine and yearly screenings.
By Tim Murphy
Joseph van Veen is a two-time survivor. The events and membership coordinator at CATIE for the past decade, van Veen, 53, has lived with HIV for at least 32 years, developed heavy drug resistance and currently takes a total of seven drugs (some of them in the same pill) to maintain his undetectable viral load and stable CD4 count. “I’m a textbook long-term HIV survivor,” he jokes. “I’ve been on mono-, dual and triple therapy and got through the period when everyone else was dying.”
But he’s also survived something else: anal cancer. Diagnosed in 2016, he underwent five weeks of chemotherapy and radiation treatment immediately thereafter to rid himself of the cancer, which has a 50 percent five-year survival rate max if caught and treated early. More bad news? Anal cancer rates are higher among people living with HIV. The rate is especially high among HIV-positive gay and bisexual men: approximately 100 times higher than in the general population. And despite effective HIV treatments, those rates are rising.
“The main cause of death among people with HIV is cancer, and the main cancer is anal,” says Dr. Irving Salit, professor of medicine at the University of Toronto and the head of the HIV clinic at Toronto General Hospital. He’s been dealing with anal cancer in his HIV-positive patients for at least 18 years. He says that about 1 percent of his gay and bi male patients living with HIV have had a diagnosis of anal cancer, which is linked to strains 16 and 18 of HPV (human papillomavirus), which most sexually active people have been exposed to.
But now for the good news: Anal cancer is preventable—with regular screening (via yearly anal PAP smears and an exam called a high-resolution anoscopy, or at the very least digital exams) and with treatment or observation of precancerous growths. That’s why, if you’re living with HIV—especially if you are a gay or bisexual man or a transgender woman, or if you have had anal sex—it’s so important to be screened regularly. If your healthcare provider can’t or won’t screen, you might want to find one who does!
Salit, in fact, is part of an ongoing large, multi-site study, called HPV-SAVE (HPV Screening and Vaccine Evaluation in Men Who Have Sex with Men), to determine whether treating or simply watching precancerous lesions is best for preventing anal cancer. It also aims to determine if subjects who get the HPV vaccine despite already having HPV receive additional protection against anal cancer. (To learn more, visit www.hivnet.ubc.ca/clinical-trials/ctn292)
So far, says Salit, the study shows that “there’s a real lack of knowledge about HPV and about HPV-associated conditions, especially cancer as a gay men’s disease. Most of the men in the study who [initially] chose not to sign up for the screening...never really thought of anal cancer as linked to [the same HPV virus as] cervical cancer.”
An unusual case
As for van Veen, his anal cancer presented in a fairly rare manner that regular internal anal screening would not have picked up: a skin tag on his inner butt cheek. “It’s called the intragluteal cleft, but it’s really just your ass crack,” he says with a laugh. “The skin tag was itchy and bled sometimes on toilet paper.” A gastroenterologist told him it was precancerous and referred him to Toronto’s Princess Margaret Cancer Centre, where the tag and some of the area around it was surgically removed. But once biopsied, the tag turned out to be actual cancer—a very small tumour.
“It was the worst day of my life,” recalls van Veen, who received the diagnosis with his husband, Bruce Edwards, a speech and language pathologist whom he started dating in 2000. “You would think that getting an HIV diagnosis in 1986 would be, but back then I felt young and invincible. Now, thirty years later, I’m thinking, I’m not going to die from HIV but from something else. I didn’t hear anything after the word cancer. It’s good Bruce was there to take notes.”
The couple then had a tough decision to make: Delay treatment until they returned from a much-anticipated, long-planned trip to Nicaragua or cancel the trip and start treatment right away. They chose the latter—and soon enough van Veen was taking time off work to embark on a super-aggressive treatment: a five-week course of radiation and during the first and fifth weeks, chemo (fluorouracil, or 5-FU), to preventively blast the site where the skin tag had been and his local lymph nodes as well.
“The first three weeks, I barely noticed anything was happening,” he says. But then his radiation burns intensified to the point that having a bowel movement and wiping himself was excruciating. By his last day of radiation, right after Christmas, the burns were so raw and wet that when he sat down on some bedsheets naked, they stuck to his butt when he got up—and pulling them off was hellacious. “I thought, ‘Wow, it’s come to this—like pulling a kid’s tongue off a frozen pole,’” van Veen recalls.
Remarkably, up to nearly that point, van Veen had insisted on walking daily the six kilometres to and from the treatment centre—even when he’d begun to lose control of his bowels and had to memorize the public washrooms along the route. He’s no fragile flower; he completed an Ironman triathlon in 2003 and cycled 6,200 kilometres from Nairobi to Cape Town in 2004 to raise money for AIDS relief in Africa.
But by week 4 of treatment, “I finally said that I don’t need to be the hero right now,” he recalls. Thankfully, he was on a drug that kept his nausea to a minimum. He napped frequently, applied creams to his buttocks and took pain meds amid the worst of things.
“My husband calls me a goal-oriented person,” he says. “As long as there’s a finish line, I have something to work toward. So I pushed through to the end of the treatment. I had moments of depression, and it was dehumanizing when I lost bowel control, but nothing was too overwhelming.”
Reducing risk—and busting stigma
According to Salit, the single greatest risk for anal cancer—or, for that matter, all HPV-related cancers (cervical, vulvar, vaginal, penile, anal and cancers of the back of the throat)—in HIV-positive folks is smoking. In fact, 19 percent of cancers among people living with HIV in North America are likely caused by smoking, researchers published early this year in the journal AIDS, looking at data on more than 50,000 HIV-positive people over 15 years. If you are HIV-positive and smoke, one of the best things you can do as a preventive measure is quit smoking.
Beyond that, says Salit, a diet rich in antioxidants—with a focus on things like cruciferous vegetables (such as cauliflower, Brussels sprouts, broccoli) and green tea—may be protective. But he can’t stress enough the importance of screening. “This is a very serious cancer but it’s probably preventable, which is why it’s so important that HIV-positive gay and bi men and transgender women in particular talk to their providers about getting screened annually.”
He says that his study so far shows that many such folks thought they had been screened for anal cancer by their colonoscopy. Not so.
As for van Veen, he says that treatment severely affected his bowels and it took him up to eight months after he finished to fully recover his sphincter control, leading to a few embarrassing incidents. He wouldn’t wear adult diapers, though. “Pride, I guess,” he says. “I carried an extra pair of underwear with me instead.”
Since then, he’s thrown himself back into a busy life, with not just his 9-to-5 CATIE job but involvement in a local theatre, for which he is now directing a production of Doubt: A Parable, the John Patrick Shanley play that was made into a movie starring Meryl Streep. He admits he hasn’t been able to get back to working out as intensely as he did before the treatment. But he and Bruce have started travelling again; recently, they visited Iceland and Croatia and soon they’ll hit Vietnam.
He’s honest about how having anal cancer can mess with one’s sexual identity and confidence as a gay man. “Anal sex has dropped off the radar because there was so much damage done and I still have some issues around bowel control,” he says.
Plus, he adds, there was stigma of having anal cancer. “We don’t talk about the cancers below the belt: penile, vaginal, anal.” He himself admits that he often would refrain from telling people what kind of cancer he had. Yet he also tried to break the stigma by blogging about his whole experience (at jvanveen.blogspot.com). “I learned that we have to talk about these cancers,” he says. “I’m no David Sedaris, but I tried to keep the tone light and funny.”
For anyone diagnosed with anal cancer, he has this advice: “Remember that the treatment will end and you will heal. It’s not easy but it’s usually short.”
And, refreshingly bucking the common cliché, he says that having survived cancer has not imbued him with some keen new appreciation for life. “I already had that experience with HIV. That’s when I learned to live every day not as if it’s your last—but as if there is a tomorrow.”
Tim Murphy is a Brooklyn-based novelist and journalist who has been reporting on HIV for 25 years and living with HIV for nearly 20. He has written extensively for The New York Times, New York magazine and The Nation and writes regularly for POZ, thebody.com, HepMag, Impact (the magazine of Lambda Legal) and other publications. He is the author of the New York City AIDS saga Christodora and the novel Correspondents, about the U.S. invasion of Iraq and its aftermath, out next year from Grove Atlantic. He watches Paris Is Burning over and over again.
Illustration by Benoit Tardif
HIV & Anal Cancer
- HIV infection increases the risk of anal cancer.
- In the general population, anal cancer rates are higher among women than men. But among people with HIV, rates are highest among gay, bisexual and other men who have sex with men (MSM).
- Anal cancer rates among HIV-positive MSM are roughly double those of HIV-negative MSM.
- Symptoms of anal cancer include bleeding, pain, masses or lumps, but sometimes anal cancer has no symptoms during the early stages. This is why, although there are currently no guidelines or protocols for screening anal cancer, experts like Salit say that screening is key.
- Treatment usually consists of radiation and chemotherapy or surgery.
The HPV Connection
- HPV is the most common sexually transmitted infection (STI) worldwide. Most HPV infections go away within two years without causing problems.
- Of the 150 different types of HPV, only certain strains (especially 16 and 18) are associated with anal cancer.
- HPV is passed mainly through skin-to-skin contact during sex (oral, anal and vaginal). Condom use can reduce but not eliminate the risk of transmitting HPV during sex.
- In Canada, it is recommended that all children get vaccinated by age 12 to prevent HPV. Gay youth (over 9 years of age) and men who have sex with men should also get the HPV vaccine.