Author: Eva Grayzel
The storyteller gets tongue cancer? How ironic! Sharing my personal oral cancer journey publicly is a tribute to those who came before me and an obligation to those who will follow. Knowing my story will save lives. That’s why I tell it. Here it is, in a nutshell.
Just a simple little sore spot
It started with a sore on the left side of my tongue. A strange place for what seemed like an ordinary canker sore. After four weeks, I went to an oral surgeon, complaining of pain. He said if it bothered me so much, he could take it off.
Two weeks later, the oral surgeon’s receptionist called to tell me my biopsy was negative. “Excuse me, are you calling the right patient?” I was never told about a biopsy.
“The oral surgeon took tissue from your tongue, correct?” she questioned.
“Yes, that was me.” I thought to myself, 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 was negative for cancer. I had no idea you could get cancer in the mouth. No dental professional had ever used the word cancer in my presence. Cancer of the oral cavity was simply beyond my scope of understanding.
“Nothing to worry about”
Two years later, the sore returned right over the biopsy site. Eight weeks later, I returned to the oral surgeon. He reviewed my records and explained the biopsy showed a hyperkeratotic lesion. “That’s like a callous on the tongue. Nothing to worry about.”
For the next nine months, I was bounced back and forth between my dentists and oral surgeons. When the gels and rinses didn’t work, my teeth were shaved down. When that didn’t resolve the issue, I was fitted for a nightguard to protect my tongue from my teeth. Whatever was prescribed, I followed doctors’ orders.
No one ever questioned the biopsy. Unfortunately for me, the biopsy was read by a general pathologist at a local hospital. (When I was finally diagnosed, a head and neck pathologist reread the original specimen as moderate dysplasia, which was potentially premalignant. Regular clinical follow-up would have been recommended.) Instead, all my treating doctors were led down the garden path. A nonhealing lesion in a never-smoker and nondrinker has an even higher index of suspicion.
Over and over I was told, “If it doesn’t improve, come back.” If there is just one takeaway from reading my story, I hope you refrain from providing patients those directions. In essence, it is asking patients to self-diagnose. My dental professionals should have said, “If it doesn’t resolve completely in two weeks, you need to return.”
An excruciating earache was the next dead giveaway that we were dealing with something serious. However, I was unaware about any potential danger. My GP treated me for water on the eardrum. Little did we know the tumor was growing and impacting the nerve to my ear.
Searching for answers
I was desperate for a solution. A family friend and cleft palate surgeon in New York City asked me if I had been to a major medical center. I hadn’t even thought of it. Following his recommendation, I scheduled an appointment to see Dr. Mark Urken, the chief of Head and Neck at Mt. Sinai Hospital.
I took the bus into Manhattan from my home in Pennsylvania, not having an inkling that the lesion on my tongue was remotely serious. Dr. Urken looked at the classic ulceration, felt an enlarged lymph node, and asked, “Who are you here with?” I didn’t know I needed to bring someone.
His assistant made a call to my mother who lived nearby in New Jersey and could be by my side within 30 minutes. When I awoke from the “minimally invasive” procedure, my mom was squeezing my hand.
Dr. Urken took a deep breath and said, “You have a squamous cell carcinoma on the lateral border of your tongue.” Woozy from anesthesia, I asked if it was benign. In an apologetic tone, he said, “Eva, you are in an advanced stage of oral cancer.”
I never heard those words together before. You could get cancer in the mouth? Shock overtook me. My ability to hear, smell, and see shut down. Eating well, exercise, never using tobacco products hadn’t protected me from this disease. And it won’t protect you or your patients. No one is at no risk for oral cancer.
Screen and get screened!
Hygienists are on the front line for catching this disease in its early stages when it’s easily survivable. Most oral cancers are caught late, resulting in facial disfiguration, difficulty articulating words, and long-term loss of quality of life.
When I speak at dental conferences, attendees expect me to ask, “Do you screen your patients for oral cancer at least once a year?” Instead, I ask, “Do you get a thorough oral cancer screening for yourself?” You may be surprised by the answer. Talk to your doctor today and develop a standard of care for screenings in your dental office.
Three of 40 lymph nodes had cancer. I was diagnosed at stage IV. One-third of my tongue was reconstructed with tissue from my arm and leg. Since I was young, 33, with two young children at home, my oncologist recommended a maximum dose of radiation. At least, with surgery, I felt better every day. With radiation, it’s just the opposite!
On April 1, 2021, I celebrated 23 years of survivorship (and that’s no April Fool’s joke!). How did I celebrate? I told my story so others won’t have to suffer what I experienced. What greater reward and privilege could I ask for? Thank you for reading to the end. Share this story. Spread awareness. Together, we can save lives.
Motivational speaker Eva Grayzel’s survival story turns what could have been a tragic end into a powerful new beginning. She is the founder of Six-Step Screening, an oral cancer awareness campaign with patient education material for dental professionals. She authored two award-winning children’s books to promote dialogue and minimize fear around cancer. You can reach Eva at evagrayzel.com or SixStepScreening.org.