Oral cancer, one of the most dangerous forms of the disease, also ranks among the least-known and least-funded ones.
Jason Mendelsohn is trying to change all those facts.
Owner of a life insurance valuation firm in Orlando, Fla., and an active member of the city’s Jewish community, he has embarked on a one-man drive — actually, a series of bike rides and public speeches — to raise funds for research about oral cancer and awareness about its causes and forms of prevention. This follows his diagnosis with stage 4 HPV-related cancer that had spread to his lymph nodes four years ago, after he felt a lump in his throat.
HPV, a group of 200 related virus, is the human papillomavirus, which causes oral cancer.
“If the information is shared properly, [it] can impact families, save lives and bring awareness to a type of cancer that most people are not familiar with,” said Mendelsohn, 48, who underwent a radical tonsillectomy and neck dissection and chemotherapy and radiation treatments; a feeding tube in his stomach followed. “I think everything happens for a reason — by sharing my story, I will positively impact thousands of people.”
Now in remission, he recently marked the third anniversary of his last bout of radiation.
To celebrate, he hosted “a little party.”
“The clear mark is really five years — that’s when everybody takes a big sigh” he said, but “I like to celebrate every year.”
Today Mendelsohn a member of board of the Head & Neck Cancer Alliance who has started an educational blog (supermanhpv.com), is on a mission to educate people about HPV, which the Centers for Disease Controls (CDC) calls “the most commonly transmitted sexually transmitted virus” in the United States. Medical studies have pointed to oral sex and French kissing as a leading cause of oral cancer.
New data show that almost half of American men have HPV, the most common sexually transmitted infection in the U.S. People contract HPV through vaginal, anal, or oral sex with someone who has the virus, according to CDC, and it can be passed on even when the infected person has no symptoms.
According to a recent study published in the Annals of Internal Medicine, about one in nine men in the United States is infected with the oral form of HPV; the incidence is higher among men than among women.
Most oral cavity and lip cancers (squamous cell carcinomas), according to the CDC’s National Center for Health Statistics, begin in squamous cells, which line those areas. The oral cancer rate increases with age, peaking between ages 60 and 70.
According to CDC statistics, while only a small percentage of people who have contracted of one the dozens of strains of HPV will eventually have cancer (like the relationship between HIV and AIDS), HPV is the leading cause of cancer in the back of the mouth and in part of the throat, and high-risk versions of the infection can result in cervical and anal cancer, cancers of the middle part of the throat, the base of the tongue and the tonsils, vaginal cancer and penile cancer.
More common among males than females, oral cancer is higher for Hispanic and Black males than for white males.
It does not rank among the so-called “Jewish diseases,” but a 2009 study by the Israel Dental Association and the community dentistry department of Hebrew University – Hadassah School of Dental Medicine found a sharp rise in the incidence of salivary gland cancer in Israel, which the researchers attributed to the use of cellular phones; Israelis have a high rate of use of the devices, which are held under the ear, near the salivary gland.
The rate of salivary gland cancer in Israel was particularly high among young patients, the biggest users of cell phones.
In the United States, the number of people who were diagnosed with oral cancer (45,780) and who died of it (8,650) in 2015 ranked far behind breast cancer (231,840 and 40,290 respectively), lung and bronchus cancer (221,200 and 158,040) and prostate cancer (220,800 and 27,540).
“Other diseases,” outside of oral cancer, “are well known and get attention through media,” Mendelsohn said.
Warning signs of oral cancer include a white or red spot in the mouth, a sore that does not heal for eight weeks or more, or the appearance of sore or spot on the tongue.
The death rate for oral cancer, according to the Oral Cancer Foundation, “is higher than that of cancers which we hear about routinely such as cervical cancer, Hodgkin’s lymphoma, laryngeal cancer, cancer of the testes, and endocrine system cancers such as thyroid. Historically the death rate … is particularly high not because it is hard to discover or diagnose, but due to the cancer being routinely discovered late in its development.”
Pancreatic cancer is the deadliest form of the disease – 93 percent of people diagnosed with it die within five years. The five-year death rate for oral cancer is 38 percent, making it more dangerous than such forms of the disease as colon, bladder breast and prostate.
According to the American Cancer Society, research for oral cavity and lip cancer received only seven grants in the 2015 fiscal year, near the bottom of a list of some four dozen types of cancer. Better-known and better-funded types of the disease such as breast cancer (198), colon and rectal cancer (101), and lung cancer (97) topped the list.
Mendelsohn regularly writes newspaper articles and gives interviews about the disease, and gives frequent speeches about the subject, urging all men and women to have an oral cancer exam by one’s dentist. He also participates in fund-raising bike races on behalf of the Johns Hopkins Kimmel Cancer Center and a few hospitals in the Washington, D.C., area.
In an independent initiative, the Pittsburgh-based Jewish Healthcare Foundation three years ago launched a HPV public awareness initiative.
Most of Mendelsohn’s educational activities promote the work of the Head and Neck Cancer Alliance.
“Today I am cancer free and hoping to help others,” he told The Jewish Week in telephone and email interviews. “I am doing well, feel great, been spinning.” Long-term effects of the treatments: “50 percent less saliva” than normal, and tingling in “both knees to the toes and hands.”
Mendelsohn urges parents vaccinated against oral cancer at age 12, before they are exposed to the virus. “It is highly likely that their kids will get HPV, probably not the strands that cause cancer,” he said.
Mendelsohn said his encounter with cancer strengthened his religious faith. “It also solidified my belief in life insurance,” he said.