Jason Mendelsohn was taking a financial exam when he felt a bump on his neck while pondering a question.
It was April 2014 and the then 44-year-old married father of three was in the prime of his life. He was working 50 to 70 hours a week at the helm of his family business, a brokerage firm in Orlando. His days were spent traveling, running 5Ks and planning a B’Nai Mitzvah in Israel for his eldest twin son and daughter.
“I thought to myself, jokingly, ‘I don’t have time to think about dying right now,’” Mendelsohn recalls.
Still, he took the abnormality on his neck seriously and sought the advice of his dermatologist father. They made an appointment with an ear nose and throat specialist who put Mendelsohn on 10 days of antibiotics and steroids. The doctor scheduled an appointment for a biopsy, just in case the bump didn’t go away.
In the meantime, Mendelsohn flew to the Keys to run a race and to Washington to lobby on Capitol Hill. When he returned to Orlando, the bump was still there. “Thursday, I had a needle biopsy and CAT scan. On Monday, I was diagnosed with Stage IV throat cancer,” Mendelsohn says.
Historically, oropharyngeal cancer, or cancer of the back of the throat, including the base of the tongue and tonsils, was caused by tobacco and alcohol abuse and was most commonly diagnosed in patients over age 60.
But over the last two decades, there has been a sharp rise in human papillomavirus-related throat cancer, especially in men ages 40 to 60. (Five years ago, the actor Michael Douglas announced he had throat cancer, which he said came from oral sex.)
Today, men are four times more likely than women to be diagnosed with oropharyngeal cancer, according to the Centers for Disease Control and Prevention.
The cases often are diagnosed years after the initial contact with HPV, a sexually transmitted infection usually associated with cervical, anal or penile cancer. Mendelsohn said he thinks he contracted HPV some 25 years earlier from oral sex in college.
Mendelsohn, who has created a website to educate people about the disease, was in shock. “How does that happen?” he remembers wondering at the time. “I go from being the guy so busy who doesn’t have time for anything and now I have to fit cancer into my schedule. "
Oropharyngeal cancer is the fifth most common cancer worldwide and it can develop in the nasal cavity, sinuses, lips, mouth, thyroid glands, salivary glands, throat and voice box. Approximately 110,000 new cases of oropharyngeal cancer are diagnosed in the U.S. annually. Of these, 17,000 are now HPV-related.
“We’ve looked at archival specimen from the 1970s, '80s and '90s to show it wasn’t something we dismissed years ago. There is definitely a rising incidence of this particular type of head and neck cancer,” says Dr. Geoffrey Young of the Miami Cancer Institute at Baptist Health South Florida.
In fact, the incidence of HPV-related throat cancer has increased at such a rate that it has surpassed that of cervical cancer, which has been on the decline over the past 30 years thanks to routine Pap smears. There is currently no reliable screening test for oropharyngeal cancer.
HPV is the most common sexually transmitted infection in the United States and it can also be transmitted through saliva or French kissing. The Centers for Disease Control and Prevention predicts that more than 90 percent of sexually active men and 80 percent of sexually active women will be infected with at least one type of HPV at some point in their lives.
There are more than 200 types of HPV and about a dozen are high risk and can cause cancer, most commonly HPV types 16 and 18. Ninety percent of high-risk HPV infections occur without any symptoms, heal on their own within one to two years, and do not cause cancer. It’s the 10 percent of chronic infections that lead to cancer if untreated.
“People can think they might be immune to getting [HPV], but it’s so ubiquitous and has so many ways of being transmitted that almost everyone is going to be exposed to it in their lifetime,” reinforces Young.
The male-to-female ratio of HPV-related oropharyngeal cancer is nine to one. While researchers still don’t know why it occurs more frequently in men, Young explains that “oral sex partners of women with high-risk HPV have a higher risk of developing HPV head neck cancer.” Statistically speaking, that group will consist of a higher percentage of men.
“It’s a complicated disease process and there are a lot of misconceptions about it,” warns Young. “Even though there is a nine-to-one ratio with men, I’ve treated several women with this disease.”
Treatment & Prognosis
The good news for those diagnosed with HPV-related oropharyngeal cancer is that there is an 85 to 90 percent cure rate.
Most treatment plans will consist of some combination of transoral robotic surgery, radiation and chemotherapy. If surgery is all that’s required, treatment could be completed as quickly as a single night in the hospital. In most cases, a six- to seven-week course of radiation and chemotherapy is prescribed.
Mendelsohn underwent a radical tonsillectomy followed by seven weeks of radiation, five days per week, and seven rounds of nine-hour chemotherapy with a feeding tube in his stomach. Side effects during his treatment and shortly thereafter included the inability to swallow and severe burns to his throat, which is common.
Advances in radiation therapy have led to a higher cure rate and a better quality of life both during and after treatment. Dr. John Greskovich, a radiation oncologist at Cleveland Clinic Florida, pioneered a type of therapy that allows doctors to target the tumor and adapt the radiation as the tumor shrinks to spare healthy tissue.
“The vast majority of HPV oropharyngeal cancers are cured,” says Greskovich. “We’re learning that HPV positive versus negative cancers should be treated differently. Radiation has improved significantly over the last decade, so that the horror stories about how patients after radiation can’t swallow, have feeding tubes, can’t taste their food, all of these are really nonexistent anymore. They’ve really gone away with the new technology.”
Screening & Vaccination
While there is still no screening test to detect oropharyngeal cancer, Young has a list of warning signs. You should be evaluated if any of the following symptoms persist for more than two weeks: a lump in the neck, the sensation of something stuck in your throat, blood in your saliva, a change in your voice or difficulty swallowing.
Dentists and primary care physicians may also be able to note asymmetry in the tonsils and other abnormalities through a visual exam, but there is still a lot that they can’t see.
Today, the best line of defense against HPV-related cancer is through vaccination, which has been available since 2006. The CDC recommends that all boys and girls be vaccinated around age 11 and 12. Women can get the vaccine up to age 26 and men up to age 21. Awareness of HPV-related cancer prevention is increasing and 60 percent of adolescents nationwide receive the HPV vaccination. However, this still falls short of the CDC’s 80 percent goal.
All of Mendelsohn’s children have been vaccinated and he’s found a calling in spreading the word about HPV-related cancer prevention and awareness through his website Supermanhpv.com. He’s also a member of the executive board of the Head & Neck Cancer Alliance and travels frequently for speaking engagements.
Today, healthy at age 48, Mendelsohn reflects on his journey and looks to the future.
“There were things on my bucket list, but you don’t need a bucket list when you’re afraid you’re not going to make it to 45 when you’re 44,” he says. “Right now, I’m planning a safari in Africa for my son’s Bar Mitzvah in 2020 because it was on my list to do one day. It’s not like I have a ton of money, but I’m going to be responsible and save to do memorable things with my wife and kids."