In the summer of 2010, Gary Bolnick started to feel weighed down with a new kind of weariness. A self-described workaholic, he was used to burning the candle at both ends. But when he discovered lumps in his neck, he went to his doctor to get it checked out.
"They were like, 'Don't even worry about it, it's all good,'" he tells Broadly. But when his symptoms started to worsen—the fatigue continued and the lumps grew in size—he went back to the doctor, who took a biopsy. On New Year's Day, 2011, he received the results: stage-4 tonsil cancer.
The leading cause of tonsil cancer is tobacco use, but Bolnick, who is married with two kids, didn't smoke. His doctor told him that his cancer was caused by human papilloma virus, or HPV. It was only three years earlier that Maura Gillison, now a professor of internal medicine at Ohio State, published the results of a seven-year-long population study that discovered people with head and neck cancer were 15 times more likely to be infected with HPV in their mouths or throats than those without.
Bolnick had his tonsils removed immediately, and afterward underwent radiation and chemotherapy. "I had a feeding tube and lost a lot of weight. I lost about 80 pounds," he says. "From there, I was kind of off the grid for a year. I had a lot of adverse reactions to the chemo and the radiation, and I was in pretty bad shape. I wasn't really able to function in my job and in my life. I was really out of it."
HPV is the most common sexually transmitted disease in the US—there are more than 100 types, though not all cause health problems. But today, more and more people, predominantly men, are being diagnosed with oral HPV-related cancer. That's not surprising, since a recent report from the CDC found that between 2011 and 2014, more men (6.8 percent) than women (1.2 percent) had high-risk oral HPV, or a strain of HPV known to cause cancer. Within 20 years, health experts expect the majority of head and neck cancers to be caused by HPV-positive carcinomas instead of smoking and alcohol, and by 2020, the rates of HPV-related oropharyngeal (area encompassing the throat, tonsils, and back of the tongue)cancer will surpass those of cervical cancer.
It's unclear why more men are affected by this disease, says Krzysztof Misiukiewicz, an oncologist with the Mount Sinai Center for Head and Neck Cancer's HPV Program for Men, but research has shown that oral sex is the main risk factor. In fact, in 2013, actor Michael Douglas revealed that his stage-4 throat cancer, which he later admitted was actually in his tongue, was the result of cunnilingus.
"Whenever we talk about HPV-positive cancer, we think this person had multiple, multiple, multiple sexual partners," Misiukiewicz says. "It's not about being more or less promiscuous. We have couples who have been married for 60 years … and unfortunately, they develop this cancer. The virus stayed quiet and then became visible after 60 years of marriage."
The good news is that the prognosis is pretty good for cancer patients who are HPV-positive and have never smoked. Even many of those whose cancer returned after remission have a good chance at survival, Misiukiewicz says.
But, as Bolnick confirms, the treatment "is really rough."
Currently, the only way to safeguard from developing any HPV-positive cancer—whether it's oral, cervical, penile, or anal—is to be vaccinated. But the vaccine only works for people who have not been exposed to the virus yet, and about 14 million people become infected with some form of it each year. That's why the age requirements are fairly young: The CDC recommends the HPV vaccine for young women at age 11 or 12, through 26, and for young men through 21.
But historically, few young people get vaccinated. The HPV vaccine was initially approved for girls in 2006 to help prevent cervical cancer. Later, in 2010, those recommendations were extended to teenage boys as well to protect against genital warts.
However, according to Misiukiewicz, many parents are ill-informed about HPV or think getting the vaccine promotes sexual activity or promiscuity, and will bar their children from getting vaccinated. In 2014, for example, only 40 percent of girls aged 13-17 received all three doses of the vaccine. For teen boys, that figure was about half (21.6 percent).
"About 80 percent of the US population has been exposed to the virus at some point, so it is very important to vaccinate young people before they initiate sexual activity," Misiukiewicz says. Doing so would eventually lead to a decrease in incidence and prevalence of this cancer, he says.
Most people who contract HPV clear the infection on their own, and only a small fraction of patients will go on to develop HPV-positive cancer, Misiukiewicz says. But unlike cervical cancer, which can be detected early through regular pap smears, there are no preventative interventions for HPV-related oral cancers. Also, condoms cannot fully protect against the transmission of HPV, Misiukiewicz says. And according to the Oral Cancer Foundation, by the time cancer is detected in the mouth or throat, it's usually pretty advanced.
"I don't know what determines who develops the cancer and who doesn't," Misiukiewicz says. "We still don't know, but it does not mean once you've been exposed you're going to develop the cancer." A study published in the Journal of Clinical Oncology echoed his point: In trying to determine the risks patients with HPV-positive oropharyngeal cancer posed to their partners, researchers found that the partners did not have higher oral HPV infection when compared with the general population. As a result, their cancer risk remained low.
Bolnick and his wife participated in that study. She ultimately had her tonsils removed because she came back positive for HPV and was at a higher risk for cancer, he says.
Bolnick has been cancer-free now for six years. He admits he had no knowledge of HPV's links to cancer prior to his diagnosis. "Not at all," he says. When he met with the doctor who would ultimately treat him, he says he didn't really understand what it all meant.
"I still don't fully understand," he says. At the time, "it really didn't connect with me. To be honest with you, I was so overwhelmed with the fear with what I was going through. I wasn't really focused on the cause as I was on how to fix it."
"It [was] an experience beyond life-changing and scary," Bolnick says. "It is just a painful process."