My Oral Cancer Survivor Story: A Message to Dental Professionals

After radical surgery and a maximum dose of radiation, I'm here to tell my story surviving stage IV oral cancer. It all started with a sore on the left side of my tongue. A strange place for what seemed like an ordinary canker sore. After 4 weeks, I went to an oral surgeon complaining of the pain. He said if it bothered me so much, he could take it off.

2wks later I received a call from the oral surgeon’s receptionist that my biopsy was negative. “Excuse me, are you calling the right person?”
“The oral surgeon took tissue from your tongue, correct?” she questioned.
“Yes, that was me. I didn’t know It was being biopsied.” I thought ‘what could they possibly be looking for in a biopsy of the tongue?’
“You have nothing to worry about,” she assured me. I did not know I had to worry.

She should have said, my biopsy is negative FOR CANCER. I had no idea you could get cancer in the mouth. I was unaware my pathology was read by a general pathologist who read moderate dysplasia as hyperkeratosis.

I had no obvious symptoms for 2 yrs since the biopsy, but early stage oral cancer is often asymptomatic. The texture and color were changing but I didn’t feel it.
Then the sore returned right over the biopsy site. For 9 months, I was bounced back and forth between my dentists and oral surgeons. They prescribed gels, rinses, having my teeth shaved down, wearing a night guard. They kept saying ‘if it doesn’t improve, come back.’ In essence they were asking me to self-diagnose myself. They should have said, ‘if it doesn’t resolve completely in two week, you need to return.”

Then, I had an excruciating ear ache. The tumor was sitting on a nerve to my ear. My GP treated me for water on the eardrum. I was desperate for a solution. A family friend in NYC asked me if I had been to a major medical center. I didn’t even think of it!

My doctors kept saying, "If it doesn't improve, come back." In essence, they were asking me to self-diagnose myself. They should have said, if this doesn't resolve in 14 days, we want you to come back.

My advice: SNAP: Snap a photo. Every dental practice should have a camera. You can't possibly remember what a suspicious lesion looked like two weeks ago.
S: SAY the words oral cancer
N: Never say 'If it doesn't improve come back.'
A: Always follow up. You can't possibly know how suspicious tissue will progress.
P: Pathologist. Was it a general pathologist or an oral pathologist?
If your patient continues to complain, have the tissue reevaluated or re-biopsy.

Hygienists are on the front line at catching this disease in its early stages. If you catch it early, it's very survivable. I thank you from the bottom of my heart for educating patients, raising awareness, and saving lives.

Follow me on IG @evagrayzel and @6stepscreening for sharable images to raise awareness and save lives.

https://www.facebook.com/evagrayzel/
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Go to https://www.SixStepScreening.org for more information.

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  Mouth Cancer