The diagnosis
While taking a financial exam, Jason Mendelsohn rested his head on his hand to think. The 44-year-old felt a strange lump on his neck. When he called the ear, nose and throat doctor, the response was that it was probably nothing and, since he doesn’t smoke or drink excessively, he wouldn’t need to make an appointment for a couple of weeks. Jason answered, “I’ll be there Monday.” Jason had never felt stronger in his life, and he had no other symptoms, but that’s who he is—a “guy who goes to the doctor.”
It was a good thing he didn’t wait. After a ten-day antibiotic cycle with no improvements to the mass on his neck, further testing was necessary. “Thursday I had a CT scan, Friday a needle biopsy. Monday I found out I had stage IV squamous cell carcinoma.” The father of three was shaken with disbelief: “All of a sudden I go from being a guy working 50–70 hours a week and at every single kids’ event, fully involved, to having a radical tonsillectomy, neck dissection, seven weeks of chemo, radiation and a feeding tube.”
A man on a mission
The cancer was caused by a high-risk strain of human papillomavirus (HPV), the world’s most common sexually transmitted infection (STI). The immune system is usually able to fight the virus off, but sometimes, as in Jason’s case, a high-risk strain lingers and, after 10–30 asymptomatic years, the persistent infection turns into cancer.
Because HPV is responsible for 99% of all cervical cancers, however, many people associate its dangers only with women. Jason has made it his mission to challenge this misconception. Men can also develop cancers from HPV.
Going public to make the issue known, though, has sometimes left him vulnerable. When he first set up his website and fundraising activities, a friend of his wife of 22 years asked:
Why aren’t you embarrassed?
With a chuckle, Jason explains, “She wasn’t being mean—it’s just that I’d be publicly admitting I had an STI. But three out of four adults will get HPV. Why should I be embarrassed?”
As with all cancers, early detection is key. Sadly, when there’s a stigma attached to how you got that cancer, some men may fear testing. He counsels: “Having contracted the virus is not a sign of bad character and doesn’t mean a man cheated on his wife. It’s not only risky sexual behaviour that leads to infection.”
The most generous gift is time
When he was first diagnosed, Jason hadn’t known that men could get cancer from HPV and he couldn’t imagine what to expect from treatment. He also had trouble finding any information on his illness.
Jason learned that a client of his had had tongue cancer six years earlier. She was the only one who understood his particular physical and emotional pain: “Every day she would text me and say ‘only three more weeks…’ Being reminded it was temporary was what got me through.” As soon as he was healthy again, Jason discovered he wanted to be that person for others.
“Jason called me from his office,” remarks Julie Beckhoff, a caregiver who reached out to him for advice. “He was working but he gave up time for me during his day.” Julie had been flying back and forth out of state to care for her friend Jay during his oral cancer treatment. She continues: “Speaking to Jason and knowing he had gone through this experience and come out on the other side made me think, ‘If Jason could do this, Jay can do this. We can do this.’”
The legacy
Jason serves on the Executive Board of the Head and Neck Cancer Alliance, raising awareness of prevention, screening and treatment options. Despite scientific advancements, the renowned doctors and researchers Jason was working with kept giving him the same message: “The patients feel alone.” He had felt that way, too, and Jason realised that being able to support people on a grander scale is “the one piece that’s missing” in oral cancer care.
Jason has begun building an international patient–survivor–caregiver network to comfort patients through weeks of third-degree throat burns, severe dehydration and constant choking. His goal is that this network of volunteers will help patients worldwide with knowledge, kindness and encouragement.
For the moment, however, he provides inspiration and information for up to 20 patients a month on his own. When asked how he has time to help so many strangers, Jason shrugs modestly: “If anyone wants to talk to me, I give them my phone number and email address. If they text me, I text them back.”