‘I Almost Died of Oral Cancer at Age 33—This Is the First Sign I Wish I’d Paid Attention To’
When you’re at a routine dental cleaning, you may hear your dentist tell you to floss more (with string floss, not floss picks!) or to stop biting your nails. Having a cavity or two may be the worst news you expect—and that’s fair. What many of us don’t realize, though, is that dentists are also supposed to check for oral cancer, and yet, sometimes, they don’t.
Eva Grayzel, now 59 years old and living in Jacksonville, Florida, was diagnosed with stage IV oral cancer at age 33—two years after she noticed a sore on the side of her tongue that would not heal. Upon getting the diagnosis, she felt “unobliterated shock,” not realizing she could get cancer in her mouth. “I ate well, exercised, had no risk factors (never smoked, rarely drink),” she says. “When I got the news, my body shut down. I don’t remember anything for the next 24 hours.”
Almost 58,500 Americans are diagnosed with oral or oropharyngeal cancer each year, in which over 12,250 people will lose their lives. The likelihood of having this cancer also increases with age. Knowing the warning signs—and getting a screening at the dentist’s office—are key protective steps.
Related: Should You Floss or Brush First? Dentists Reveal the Truth About Your Dental Routine
The No. 1 Red Flag Grayzel Wishes She Noticed Before Almost Dying of Oral Cancer
Remember that sore on Grayzel’s tongue? That was the main red flag she wished she had paid more attention to.
A sore doesn’t *always* mean cancer, though, which may be why some folks get a late diagnosis. According to a 2022 review in Malaysian Family Physician, oral lesions that don’t resolve after three weeks should be investigated by a specialist since they're more concerning. Then, if oral cancer is present, it will be diagnosed with a biopsy.
Related: ‘I Was Diagnosed With Pancreatic Cancer at Age 64—This Is the First Unexpected Symptom I Noticed’
Other major symptoms Grazyel experienced were one-sided pain in her ear and tongue. At one point, her oral surgeon said her tongue pain must have been from biting it at night—but that wasn’t the case (obviously). There’s your reminder to listen to your gut!
Grayzel warns that early oral cancer is often asymptomatic—so again, screenings are crucial. “If you catch it early, it’s very survivable,” she added in a YouTube video sharing her story, which has reached over 33,000 views so far.
An Emotional Recovery Process
After getting a diagnosis, the next step—treating the oral cancer—meant surgery. She says it was a challenge, but it also brought feelings of hope. “One-third of my tongue was reconstructed from my arm and leg, and 40 lymph nodes were removed from my neck,” she recalls. “But with surgery, every day I felt better and when you’re feeling better, there is hope.”
The radiation afterward made her feel the opposite, though. “Every day I felt worse,” she says. “I kept thinking, ‘It can’t get worse than this,’ and it did.”
After the fourth week, she could barely eat or speak. “I hit rock bottom, planned my funeral, wrote a letter to my husband about where I wanted to be buried and what I wanted to be written on my tombstone (one less thing he would have to do), and I wrote a letter to my children about my dreams and wishes for them,” she says.
Thankfully, she’s still with us today, and if you ask what saved her, she’ll say her two children. They gave her hope and encouraged her to push through. “I lived because I accessed strength I didn’t know I had,” she continues. “I lived because I was meant to do more in this world—raise awareness and make sure what happened to me (a late diagnosis) doesn’t happen to others, through education.”
Related: ‘I Was Diagnosed With Cancer at 16 and Again at 39—These Were the Very First Symptoms I Noticed’
What Grayzel Wants People To Know about Oral Cancer
First and foremost, prevention is key. “It is not okay if you aren’t receiving an oral cancer screening at your dental checkup,” Grayzel says, specifying an intraoral and extraoral exam, as noted in the American Dental Association’s (ADA) guidelines. “Few dental practices take it seriously. This screening is about life and death, and it takes less than three minutes!”
More specifically, you’re looking at a six step process, which she educates the public about through www.SixStepScreening.org. Those steps include a neck slide, “tonsil ahhhh,” tongue ‘n’ gauze, floor probe, lip & cheek roll, and palate tickle, according to her site.
To ensure your dentist carries out the screening, Grayzel recommends confirming with the receptionist. Then, a day or two before the appointment, when the office sends a reminder text, confirm again. “If you don’t get an oral cancer screening, switch dental offices,” she urges.
Now, Grayzel spends her time raising awareness, saying it’s an obligation. “All those who came before paved the path for me to get the extraordinary treatment I did, and I feel obliged to pass it forward, to help prevent a late diagnosis for all those who will come after me,” she says. Before cancer, she was an interactive storyteller. After surviving cancer, she transitioned into telling her own story, calling herself a Master Storyteller and Visionary Survivor.
Grayzel still has the letter she wrote to her children when she thought she was going to die—and she updates it every 10 years—but the feeling behind it isn’t so hopeless. After all, she fought oral cancer, came out on the other side and knows a simple screening can prevent so many people from having the same experience she did.
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Related: If Your Gums Bleed Every Time You Floss, Here's What Dentists Want You to Know
Sources
Eva Grayzel, a survivor of oral cancer and Master Storyteller Visionary Survivor who founded Six-Step Screening
Oral Cancer Facts, Oral Cancer Foundation
Oral Cancer, Illinois Department of Public Health
Overview of common oral lesions, Malaysian Family Physician
Mouth cancer, Mayo Clinic
My Oral Cancer Survivor Story: A Message to Dental Professionals, YouTube