Jason Mendelsohn was diagnosed with Stage 4 tonsil cancer from HPV in 2014 after finding just one bump on his neck. He survived thanks to a variety of treatments, including a radical tonsillectomy and neck dissection to remove 42 lymph nodes, seven weeks of chemotherapy, radiation and a feeding tube.
But if Mendelsohn’s cancer had been discovered today, just four years later, it would have been classified as Stage 1. That’s because HPV-related oral cancers now have a high survival rate through a better response to treatment, said Meryl Kaufman, a speech pathologist specializing in head and neck cancer management who worked for Emory University’s department of head and neck surgery for 10 years.
“Cancer staging is taking into account the HPV-related cancers,” said Kaufman, who now owns her own practice. “It was kind of all lumped together. The survival rates for people who have HPV-related cancers are much higher than the typical head and neck cancers associated with smoking and drinking.”
For Mendelsohn, finding out that patients with HPV-related cancers likely face easier treatments and higher success rates made him extremely happy.
“If I was diagnosed and I heard Stage 1 instead of Stage 4, while it’s still cancer, it would make me feel like I could beat it,” said Mendelsohn, who made a video for his children a month after his diagnosis with advice for their lives after he was gone. “When I hear Stage 4 to Stage 1, I think people have hope they can beat it. My hope is that it will give people hope that they can beat this.”
As a cancer survivor, the Florida resident wants to give hope to other patients. He talks to people throughout the world every month and is creating a worldwide survivor patient network to connect cancer survivors with patients.
“While cancer is scary, Stage 1 is a lot less scary than Stage 4,” Mendelsohn said. “Stage 4 was overwhelming. When I was looking for information, there was nothing out there that made me feel like I was going to be OK. What I’m trying to do is give people hope and let them know that it’s all temporary.”
Another way Mendelsohn is trying to reach those affected by cancer is through his website, supermanhpv.com. He shares his story, news articles featuring him and oral cancer caused by HPV, and information for survivors, patients and caregivers.
The site also features Mendelsohn’s blog, putting himself out there so people can see that someone who, just four years ago, was diagnosed with Sage 4 cancer is now a Peloton-riding, travel-loving cancer advocate.
“People see me and say (they) can’t believe (I) had cancer three to four years ago,” Mendelsohn said. “I was in bed 18 hours a day for a month. I was choking on my saliva for a month. I was consuming five Ensures a day and two Gatorades a day through a feeding tube in my stomach. If people going through that can see me working out, going on the bourbon tour in Louisville. I’ve been on an Alaskan cruise. I’ve been to the Caribbean. I’ve been to the Grand Canyon.”
Mendelsohn, who started his campaign to raise awareness of HPV and oral cancer by raising money for the Ride to Conquer Cancer in Washington, now serves on the board of the Head and Neck Cancer Alliance. The organization’s goal is to advance prevention, detection, treatment and rehabilitation of oral, head and neck cancers through public awareness, research, advocacy and survivorship.
“I feel like it’s gone from me raising money for a bike ride to me on two boards helping create awareness and raise inspiration and creating a survivor patient network,” Mendelsohn said. “Now it’s not about me and my three doctors. Now it’s about helping people with diagnosis globally. There are great doctors. I think we’re going to do great things.”
One way to help prevent children from getting cancer caused by HPV when they grow up is the Gardasil vaccine, which protects against HPV Strain 16, which causes oral cancer. Mendelsohn said 62 percent of college freshmen and three-quarters of adults by age 30 have HPV.
But he doesn’t tell people to get the vaccine. Instead, he advises parents to talk to their kids’ doctors about the benefits and risks.
“I talk about the importance of oral cancer screenings when they’re at the dentist,” he said. “And if you feel a bump on your neck, go to your ENT. I had no symptoms and just a bump on my neck, but I was diagnosed with Stage 4. I’ve had so many tell me that they didn’t know the vaccine is for boys. They thought it was just for girls.”
Kaufman said that the HPV vaccine is recommended for use in boys and girls and that it’s important for the vaccine to be given before someone becomes sexually active. The vaccine won’t work if a person has already been exposed to HPV, as most sexually active adults have been, she said.
Men are much more likely to get head and neck cancer from HPV.
“Usually your body fights off the virus itself, but in some people it turns into cancer,” Kaufman said. There hasn’t been specific research that the HPV vaccine will protect you from head and neck cancer, she said, “but if you’re protected against the strains of HPV that cause the cancer, you’re probably less likely to get head and neck cancer.”
Treatment for this cancer isn’t easy, Kaufman said. Radiation to the head and neck can affect salivary glands, which can cause long-term dental and swallowing issues. Treatment can affect the skin, taste and the ability to swallow.
“A lot of people have tubes placed,” she said. “It’s not easy. It depends on how well you respond to the treatment.”
While getting the vaccine can help protect against various cancers, awareness about head and neck cancer is the key. And knowing the signs and symptoms — such as sores in the mouth, a change in voice, pain with swallowing and a lump in the neck — is important.
“If one of those things lasts longer than two weeks, you should go to your doctor,” Kaufman said. “This can affect nonsmokers and nondrinkers. It’s not something that people expect. The more commonplace it becomes and the less stigma, the better.”