Now 34, Behrens is cancer-free, but he has no teeth, has a hard time eating and speaking, and his face is disfigured.
He began chewing tobacco at the age of 13, a common practice in the rural farming community in Illinois
But after developing squamous cell carcinoma in his lymph nodes, surgeons removed half his tongue and neck muscles. Still, von Behrens feels lucky to be alive.
"Eighty percent of the people with that diagnosis die within five years of surgery," he notes.
Last month von Behrens testified at a Maryland
"Tobacco is tobacco is tobacco, and I believe having a lower tax on some tobaccos and a higher tax on the smoking tobaccos -- that's basically saying this is a safe alternative when it is not," von Behrens said.
In 2010, he testified before a U.S. Senate hearing about the dangers of tobacco in professional sports.
White spot lesion
Three years after von Behrens began chewing tobacco, he noticed a white spot on the side of his tongue where he kept it.
"After passing the tobacco with my tongue, it became raw and it hurt at first but then it became kind of tough, and I started to see white spots," he recalled. "I was terrified."
von Behrens kept it secret from his mother because she had warned him about the dangers of chewing tobacco.
“Spit tobacco seemed harmless, but it has ruined my life.”— Gruen von Behrens
"I kept telling her it was my wisdom teeth that was making my speech slurred and making me drool on myself," he recalled.
When von Behrens went in to get his primary molars removed, he knew what the maxillofacial surgeon's diagnosis would be.
"I told him I had cancer before he put the gas mask on me," he said. "I was scared to death of what they were going to do to me. I was afraid of needles, let alone having surgery done."
von Behrens said his mother's anguish was the worst part. "I've never seen my mother cry like that before, and the pain that it inflicted on her hurt me more than the surgeries," he said.
34 surgeries
To date, von Behrens has had 34 surgeries and was a college sophomore when radiation treatments burned his face and forced him to have all his teeth removed.
He now serves as a spokesman for Oral Health America 's National Spit Tobacco program and travels to schools around the U.S.
"I want kids to have a fair shot with their lives and know what the effect of tobacco use is," von Behrens explained. "If I had known then what I know now, I never would have put a dip in my mouth."
He says he has traveled to 46 states and spoken to 3 million children.
"I know how to talk to kids and relate to them, and I think that has even more of an impact than my face," von Behrens observed. "My face is an attention-getter for the first five rows, but for the rest it's my story that captivates them."
He also addresses health organizations and health departments, often at the request of dentists.
Cosmetic surgery costly
He would like to have plastic surgery and was heartened by the recent story of a man who had a total face transplant.
"Oh man, that would be my dream, but I just can't afford to do that," von Behrens said.
Maxillofacial surgeons would have to replace his mandible before a face transplant could be done, he noted. von Behrens cannot wear dentures because after surgeons reconstructed his face in the last surgery, they removed his mandible and replaced it with fibula bone from his leg. They also used pectoral muscles from his chest to recreate the floor of his mouth.
Implants would require drilling into the fibula bone that now serves as a replacement for his mandible.
Today von Behrens lives in central Illinois
He also works with the National Spit Tobacco Education Program to correct the false belief that smokeless tobacco is a safe alternative to smoking.
"Spit tobacco seemed harmless, but it has ruined my life," von Behrens said.
In honor of Oral Cancer Awareness Month, Brian S. Nylaan, D.D.S. will be offering complimentary oral cancer screenings on Thursday, April 26th from 2 – 5 pm. Oral cancer is not a rare disease. Approximately 37,000 people will be diagnosed with oral cancer every year in the US. It kills one person every hour of every day, and over 100 new individuals will be diagnosed with it each day. The good news is that it can often be found early in its development, through a simple, painless, and quick screening. Who should get screened?
Every adult. Oral cancer can often be caught early, even as a pre-cancer. With early
detection, survival rates are high and the side effects are from treatment are at their lowest. Like other screenings you engage in such as cervical, skin, prostate, colon and breast examinations, oral cancer screenings are an effective means of finding cancer at its early, highly curable stages. Make them part of your annual health check‐ups.
What are the risk factors?
There are two distinct pathways by which most people come to oral cancer. One is through the use of tobacco and alcohol, a long term historic problem and cause, and the other is through exposure to the HPV16 virus (human papilloma virus version 16), which is now the leading cause of oral cancers in the US, and the same one, which is responsible for the vast majority of cervical cancers in women. The quickest growing segment of the oral cancer population are young, healthy, non-smokers due to the connection to this virus.
Early Indicators:
Red and/or white discolorations of the soft tissues of the mouth.
Any sore which does not heal within 14 days.
Hoarseness which lasts or a prolonged period of time.
Advanced Indicators:
A sensation that something is stuck in your throat.
Numbness in the oral region.
Difficulty in moving the jaw or tongue.
Difficulty in swallowing.
Ear pain which occurs on one side only.
A sore under a denture, which even after adjustment of the denture, still does not heal.
A lump or thickening which develops in the mouth or on the neck.
An oral cancer screening should be conducted every year, so take advantage of this offer and get screened today.
Call our office at (616) 361-7317, or click here to make an appointment for your complimentary screening.
For more information about oral cancer screenings click here; VELScope oral cancer screenings click here or general dental information visit our website.
