Oral cancer gained a bit of attention last month when Poison drummer Rikki Rockett revealed he’d finished with treatment for oropharyngeal cancer, a broad term for cancer that affects the back of the throat, tongue, and tonsils.

By the time Rockett’s cancer was detected at the base of his tongue, it had spread to two lymph nodes. He endured nine rounds of chemotherapy and 35 radiation treatments and is awaiting PET scan results to determine if he is cancer-free.

Late detection of cancer of this type and the associated battalion of treatments that go along with it, are common — too common, according to Brian Hill, executive director of the Oral Cancer Foundation and a survivor of stage IV oropharyngeal cancer.

“The professional community — doctors, dentists, people that routinely see patients — have taken a long time to get up to speed on the fact that you can be relatively young and not have a history of smoking and still have cancer,” Hill told Healthline. “We don’t have recognition of some of the symptoms to get diagnosed at the earlier stages of the disease.”

Read More: Teens are Missing HPV Vaccinations Because Doctors are Reticent to Talk About Them »

HPV: It’s More Than Just Cervical Cancer

That lack of recognition might be because oropharyngeal cancer isn’t caused by smoking, drinking, or other lifestyle habits that lead to other types of oral cancer commonly seen in older people.

Instead, it’s caused by malignant strains of the HPV virus — a virus more commonly associated with cervical cancer. Most people don’t realize the virus is also associated with penile, anal, vulvovaginal cancer, and, in some cases, cancers of the throat and tongue.

HPV is spread primarily through sexual contact, but, unlike other diseases such as HIV or gonorrhea, it doesn’t require an exchange of bodily fluids to pass from one person to the next. The CDC classifies HPV as a virus spread through “intimate skin-to-skin contact.”

It’s the most commonly transmitted virus in the United States and CDC officials estimate that nearly all sexually active people will get some strain of HPV in their lifetimes.

Most often, the virus clears from the body on its own without causing cancer or HPV-associated warts. On rare occasions, the immune systems of some people won’t clear the virus, and, if the particular strain is cancer causing, it can lie in wait for years before a tumor develops.

More than 33,000 HPV-associated cancers are discovered each year. Of these, about 12,000 are oropharyngeal. They are known as HPV-positive Oropharyngeal Squamous Cell Carcinomas (OPSCC) and are most commonly caused by the HPV-16 strain.

Men are three to five times more likely to develop oropharyngeal cancer than women. Researcher Anil Chaturvedi, an Investigator in the Division of Cancer Epidemiology and Genetics at the National Cancer Institute, noted that scientists still aren’t sure why more men than women get the cancer.

“The increase in the incidence of HPV-positive oropharynx cancers … has largely occurred in whites, predominantly white men. This increase in whites is thought to arise from changes in sexual behaviors through the 1950s, 1960s, and 1970s,” Chaturvedi told Healthline in an email. “The exact reasons for the predominant increase in oropharynx cancer incidence in men versus women are still unclear.”

Chaturvedi’s recent study in Cancer Research found that HPV oral infection and HPV-positive OPSCC is most common in men aged 40-59 who have quit smoking or never smoked. Men generally had a higher number of lifetime sexual partners than women, placing them at higher risk for exposure to HPV.

The research also notes that there may be a higher risk of transmission when oral sex is performed on a woman than on a man. HPV infection was found in other studies to be higher in heterosexual men than in homosexual men. No studies to date have looked at oral infection rates among women who have sex with women.

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Finding and Treating Cancer of the Throat

HPV-positive OPSCC is not widespread — yet.

About four men and less than one woman per 100,000 Americans will be diagnosed each year. But the rate is steadily increasing.

“Now the phrase epidemic is being used. You see famous rockers and everything else, and it’s increasing about 3-4 percent per year, but does that mean it is really an epidemic?” Hill said. “But research shows that in 2020, it’s going to get a lot worse. That’s because we have a very low uptake of the HPV vaccine. We’re doing a very poor job of protecting our children and grandchildren from these diseases.”

Vaccination against HPV is the only means of preventing HPV-positive OPSCC. The strains most commonly associated with cancer of any type — HPV-16 and HPV-18 — are covered by both the bivalent (Cervarix) and quadrivalent (Gardasil) vaccines.

Last year, the CDC’s Advisory Committee on Immunization Practices recommended the use of a 9-valent vaccine (Gardasil-9) for routine immunization against HPV because it covers other oncogenic HPV strains.

Finding and treating the disease is more complicated. Chaturvedi noted that these types of cancers are hard to detect, and echoed Hill’s sentiment that proper screening for the disease is lacking.

“Screening methods are not currently available for oropharynx cancers, “ he said.

HPV-associated cervical pre-cancers are detected by Pap smears and HPV cytology tests, but nothing like that exists for OPSCC.

“Research studies are still trying to identify an HPV-induced precancerous lesion, methods to identify such a lesion, and effective treatments for a potential precancerous lesion,” Chaturvedi said.

The result is cancer that escapes detection. Often, tumors can grow for long periods of time before a person experiences any symptoms.

Read More: Get the Facts on Oral Cancer »

Getting Infected with HPV

“I was diagnosed with stage IV tonsillar oral cancer. It had grown down both sides of my neck, and it was completely painless. It was a swollen lymph node that just wouldn’t go away that brought me in,” Hill said.

Hill’s story mirrors Rockett’s and that of many who are eventually diagnosed with OPSCC. It took several weeks and several specialists to finally get an answer. Once he was diagnosed, Hill was able to get treatment at one of the premier sites in the country for this type of cancer.

“I’m very lucky,” he said, noting that he is “part of a privileged class of people” and not everyone has the resources he had to get treatment.

Survivability rates are higher for HPV-positive OPSCC than other oral cancers, in part because they have increased sensitivity to chemotherapy and radiation. Nonetheless, enduring those treatments is no walk in the park. Hill offers a few words of advice to anyone who is diagnosed with the disease.

“Don’t beat yourself up about it. Getting an HPV infection is the bad luck of the draw,” he said. “Keep your hopes up, and do what your doctors tell you to do, and don’t disappear on your treatment. Conventional treatments are brutal, but they work.”