- Oral Cancer
- Dentist / RDH
- Six-Step Screening
- Book Eva to Speak
We often imagine that the face of oral cancer is a male in his 60s who has used tobacco products.
The real face of oral cancer can be quite different.
Symptoms: Non-healing sore on tongue. Eventually, ear pain.
Treatment: Glossectomy 1/3 of tongue, neck dissection, radiation.
Delay in Diagnosis: 9 months
The painful lesion was biopsied at age 31. A general pathologist missed the dysplastic cells. During the next two years,the tissue over the biopsy site was changing, but my dentist failed to recognize the early signs. When the sore returned, I was treated for trauma and ‘biting my tongue’…for nine months. I had radical surgery and a maximum dose of radiation. Chemo wasn’t recommended in 1998 for squamous cell cancer on the lateral border of tongue. I don’t want what happened to me to happen to anyone else so I developed Six-Step Screening. This is a photo of me on my last day of radiation.
Symptoms: Swollen lymph node, constant sore throats
Treatment: Surgery, chemo and radiation
Delay in Diagnosis: One year and a half
If something does not feel right, don’t ignore it… like me. I keep thinking about how my life would be different if I sought proper care as soon as I noticed the persistent and abnormal signs. There were days I didn’t want treatment anymore, but I forged ahead choosing life! I struggle with my emotions even after I’ve been told I’m cancer free. I share my story with others so everything I’ve endured will inspire others to seek the answers to a persistent health issue, before it’s too late.
Symptoms: White patch under tongue which burned occasionally
Treatment: Tongue resection, neck dissection (which was negative)
Delay in Diagnosis: 3 weeks
It leaves me breathless to think about how timing makes the difference between life and death. My dentist didn’t see what was under my tongue. When I mentioned my symptoms to my family doctor, her reaction of urgency alarmed me. Two biopsies later they found the cancerous cells. I am lucky. But the fear of it returning is constant. I cannot stress the importance of good medical practitioners, screenings at ever dental visit, and awareness raising.
Symptoms: earache, headaches, nose bleeds, and lost my appetite.
Treatment: Radiation and chemotherapy
Delay in Diagnosis: One year
I was in the ER several times for unrelenting nose bleeds. I was diagnosed with an ear infection. Then, a mass developed on the left side of my neck. After months of deterioration, they found a tumor so large it filled my sinus cavity and grew into the ear canal, nearing my brain. I was given 6 weeks to live. My mother was told to take me home and make me comfortable.
I had radiation to “buy time” and prolong growth to my brain, and experimental chemotherapy, too. I turned 13 and looked like a walking skeleton that had a fire put out on my face. After 7 weeks, the CT scans were clear!
Now, at age 44, I deal with long term effects: difficulty swallowing from a nonfunctional epiglottis, esophageal strictures, severe hearing loss, and a deteriorating jaw. I chose a career in radiation therapy so I could encourage patients by telling my story.
Symptoms: Hoarse voice, occasional ear and collar bone pain.
Treatment: Radiotherapy and chemotherapy
Delay in Diagnosis: One year
An ENT diagnosed me with a vocal cord polyp but the biopsy came back positive for cancer. I had a choice: a complete laryngectomy or chemotherapy/radiotherapy. I’ve been in complete remission since 2008. My voice returned, too!
Symptoms: Hoarse voice
Treatment: Surgery, Chemo, Radiation
Delay in Diagnosis: 1.5 years
We were told Jak’s hoarseness was psychosocial from his Tourettes. After a year, his breathing became difficult. An ENT told us it was asthma and prescribed steroids. When we returned, the ENT told us Jak was ‘acting up.’ A GP told us he had polyps and scheduled surgery, during which they found the tumor. We were told if it had been left any longer, he would be dead. Jak is the 4th kid in the UK to ever have SCC of the larynx.
Symptoms: Burning tongue
Delay in Diagnosis: 1.5 years
For 18 months I saw dentists, oral surgeons, family doctors, ENT’s, and emergency medicine doctors (both in the USA and the UK). They all called it ‘burning mouth syndrome’ and prescribed antibiotics, mouthwashes and anti-fungal creams. After begging for a biopsy, I got the call – it was cancer. No chemo or radiation or neck dissection. It was 2005.
In 2010, I had pain in the same area. It was dysplasia. I had laser surgery on the same spot to ensure they got it all. In 2012, I had the same complaint of pain and a new spot. It was dysplasia again but required no further treatment. 2 months later, I complained of a spot and discomfort. They lasered it again.
We need more time and attention devoted to oral cancer research. My story is not over!
Melissa was treated at Memorial Sloan Kettering. A portion of her tongue was reconstructed with tissue from her forearm. She underwent aggressive chemo and radiation treatments.
Melissa lost her battle with oral cancer on January 22, 2010, one year from her diagnosis. She was a vibrant person who loved and cared deeply for her family, friends and her furry friends, too. She loved Halloween and shoes! Melissa’s smile perfectly complimented her personality. Although her journey through this aggressive and ugly disease was short, she fought her heart out!
Jeremy’s sore was not recognized by his dentist. It became increasingly painful, affecting his ability to talk and swallow. Diagnosed by ENT October 2007. Lost 75% of tongue in surgery November 2008.
Age 32 at his passing. Father of 2 boys, and incredible athlete! Wonderful talents in working with people. Truly a caring, giving, loving and special person who is greatly missed by many.
Symptoms: Painful lesion on tongue
Treatment: Surgery: Half my tongue removed and reconstructed. Neck dissection.
Delay in Diagnosis: 2 years
In 2007, a small lesion was biopsied. It was “not a big deal.” In 2011, a lesion in the same spot continued to be painful. My dentist sent me for a biopsy. I didn’t go to the place of “cancer” in my mind. My dentist was ‘concerned’ but I kept putting it off because of work and being busy with my kids. It wasn’t until I was having the biopsy that I knew something was wrong. They tried 7 needles of novacaine and my tongue wouldn’t go numb because they were injecting the tumor itself. Finally, I had to go through the procedure feeling every cut and stitch. Tears streamed. Knuckles were white squeezing the armrest. It’s traumatizing to think about. But, that is when I knew cancer was a possibility.
October 25, 2012, I celebrate my one-year cancer-free anniversary. At the time of diagnosis, my children were two years and six months.
There is a stigma with oral cancer; when people hear that I smoked, even though it was casually and only for a few years, they assume its because of smoking. My doctor doesn’t think smoking caused my cancer.
Symptoms: Painful, non-healing bump on tongue
Treatment: Glossectomy 1/3 of tongue, neck dissection, radiation and chemo.
I thought my tongue was irritated due to the lack of a tooth. When I went to the dentist for a bridge, he referred me to an oral surgeon. The biopsy showed cancer. I’m a stay-at-home Mom and I don’t know if I could have worked and gone through the treatment at the same time! I am looking forward to living a healthier lifestyle, watching my boy grow up and being the best wife to my husband. I can honestly say, life is good!!! WAIT… life is great!!!
Symptoms: Abnormal spot on tongue
I’m a Dental Hygienist My brother-in-law is an ENT. At Christmas, I showed the spot on my tongue to him and he wasn’t concerned. A few months later, I showed it to him again, and he wasn’t concerned. I took the matter into my own hands, and I’m glad I did!
Symptoms: Painful lump on the floor of my mouth. Eventually, ear pain.
Treatment: Surgery, radiation and chemo.
My dentist wanted it biopsied ASAP. The ENT thought it was a stone or an infection. After ten days on antibiotics, the CT scan showed a sinus infection, so he prescribed three more weeks on antibiotics.
During this time, I saw an oral surgeon who told me to come back in a month if it did not improve. By this time, I had severe pain in my ear. The ENT removed the painful lump, telling us it did not look like cancer, but he was sending it for a biopsy anyway.
Four days later we got the call that changed my life forever. I had surgery with clear margins. My scan was clear. One month later, something did not feel right. I had intermittent ear pain. I went back to my dentist and he saw a suspicious white spot at the back right side of my tongue and wanted another biopsy. The ENT wasn’t concerned and wanted to watch it asking me to return in 2 months. At that appointment, he still wasn’t concerned, but I complained about more pain around the area, so he did a biopsy. My dentist was right from the beginning…it was cancer, again! If it weren’t for my dentist, I may not be here today.
Symptoms: Burning tongue. Then, a sore.
Treatment: Surgery and Radiation, but no chemo.
I met 6 people during my fight ranging in age from 23-63. Unfortunately, only two of us lived. I am the 4th in my family to have H&N cancer. Genetic? Or just environment habits we formed that affected the whole family?
Symptoms: Abnormal oral tissue and pain
At 32, I had mild dysplasia. At 34, I had moderate dysplasia. At 35 and pregnant with fourth child, diagnosed at stage I. 4 years after surgery, irritated white area on tongue, biopsy negative. One year after that, it became severe dysplasia. When will this end?? I was counting the days to my five year cancer-free mark!
She visited a dentist shortly before my wedding about the ill fitting denture and pain. A couple of months after my 1st anniversary, she was diagnosed. 3 weeks after surgery, the cancer returned. She lived 6 months after her diagnosis. No one in our family knew anything about oral cancer or that it even existed.
Symptoms: Sore on tongue, pain in ear.
Symptoms: shooting pain between ear and jaw, attributed to my TMJ.
In a routine dental cleaning, my dentist noticed a swelling in the rear roof of my mouth. The lump was painless to the touch, but had been pressing on a nerve and causing the ear/ jaw pain. The intermediate grade tumor had spread to the adjacent jaw bone. I had a partial maxillectomy removing most of my palate, some jaw bone and three molars followed by 6 weeks of radiation. I now wear an obturator and had to relearn to eat and speak. With the support of my family and doctors – especially my amazing prosthodontist, I have come a long way, baby!
Symptoms: Pain in tongue, like stinging bees when swallowing.
Recurrence: 3 months later
Delay in diagnosis: 1.5 years
It hurt to stick out my tongue. The ENT prescribed acid reflux meds. I stayed on them for one year. Pain persisted. Another ENT biopsied a spot on my palette on back of tongue, both negative, and removed my left tonsil, saying it was embedded and the source of my pain. Pain persisted. 4 months later eating became a challenge. I went to another ENT who biopsied an ulcer. After the surgery for SCC, removal of the tumor and lymph nodes in neck, I was told I was cancer free. Why wasn’t radiation recommended?
3 months later, I felt the tongue pain and the cancer was back. The doctor explained that a ‘tendril’ was probably left behind in the first surgery, that went undetected. Another portion of my tongue was removed. I begin radiation soon. It encourages me to hear about other survivors. God bless you all!
Symptoms: Lump in neck for two years that didn’t bother me.
If only I knew a lump in the neck could be a sign of oral cancer. My goal is to recover and play the pipes again. My twelve year old son is getting the Gardasil shot for sure!
Four years after I had breast cancer, I was diagnosed with Stage IV base of tongue cancer. Chemo and radiation followed. I never met another woman who had been through what I’d been through until I met you, Eva. I believe people do come together out of the clear blue sky for some greater purpose. 7 years later, I was diagnosed with parotid gland cancer. Full recovery expected. Diligence in follow-ups paid off and this one was caught early!
Symptoms: For years, I was told my symptoms were a result of TMJ.
Precautionary radiation did more damage than good. I have a half-dollar-size hole in the roof of my mouth that requires a prosthesis for eating and speaking. Cancer free 4 1/2 yrs. When all is said and done; the most important thing is that I am still here for my kids (now 22,14,7)!!!
Symptoms: Sore on tongue
Treatment: Chemo, radiation, brachiotherapy…He lived in agony 24/7 with feeding tubes, oxygen and a trach, unable to eat or speak.
Delay in Diagnosis: He wasn’t one to visit doctors until it was stage IV
He was obsessive about his oral health and used Listerine 4-5 times a day for over 20 years. He was self-employed and had no health insurance. He was healthy and active and didn’t think a canker sore was a necessary reason to visit a doctor. After 9 months when eating became painful and he had ear pain, he went to a doctor who said it was stage IV and inoperable.
There is no conclusive evidence that the alcohol content in mouthwash causes oral cancer, but his doctors seemed to think it was a contributing factor.
Not a day goes by that I don’t think about my brother, David. I’ve dedicated my life to raising awareness, helping survivors, and comforting those who lost their loved one. Submitted by his loving sister, Susan.
A dentist extracted an irritated wisdom tooth. It released easier than expected and uncovered a grey unhealthy tissue: Osteosarcoma of the mandible. Surgery took 10 hours to rebuild my jaw with my fibula. Chemo and radiation followed. A reoccurrence one year after that required a second surgery and more chemo. I developed an infection of the bone which required a third surgery. Cancer free since 2008!
Ken saw an ENT with his symptoms 6 times over a year. The original biopsy was read as negative. They did swallow studies and finally decided to shave his lingual tonsil. It was then they decided to do another biopsy instead. The tumor was huge by then. Radiation and chemo did not get all the cancer. On his 44th birthday it was confirmed that the cancer was still there. Seven months after diagnosis, he was scheduled for surgery to remove his tongue and voice box. The day before, his carotid artery ruptured and my dear husband passed away while waiting for the ambulance. Our daughter was only fourteen months old when she lost her father. I believe that if we pushed for more after the initial biopsy or gotten a second opinion, he would still be here.
Symptoms: sore on my tongue that didn’t go away.
One-third of my tongue was removed and about 30 lymph nodes. 38 radiation treatments and 3 sessions of chemotherapy. It’s been three years and I consider myself very lucky to be alive and enjoy grandchildren!
Symptoms: persistent sore on lateral tongue.
My dentist did not know what it was. He told me to come back if it didn’t heal. So I went back again and he still didn’t know. He sent me to an oral surgeon who put me on topical steroids for a few weeks. That didn’t work. Finally the oral surgeon did a biopsy and we found out that it was cancer. Needless to say, I have changed dentists and will not go back to that oral surgeon. Too many dentists don’t know how to screen for cancer and even what to look for.
This photo was taken on my son’s 11th birthday, after my diagnosis, 1 week before surgery.
I was overdue for my twice-yearly dental cleaning. The dental hygienist found a swelling on the floor of my mouth, right side. I didn’t know about it. When asked about my health, I admitted I had some throat soreness the previous week, 2 severe headaches, and a passing earache on the right side. X-rays ruled out a clogged duct. A needle biopsy of 8-10 sites were all negative for cancer. When the entire gland was removed, they found cancer cells. I underwent 6.5 weeks of radiation. I’ve had a high stress job for over half my life, together with exposure to numerous carcinogens.
Symptoms: persistent sore throat and white sore on tongue.
I was Stage 3 at first occurrence. Partial neck dissection revealed two positive lymph nodes so I underwent radiation and a tracheotomy. 12 years later it came back. First, I was put on antibiotics. When it didn’t go away, they did a biopsy. It was negative. Eventually, they did another biopsy and it was squamous cell carcinoma. Most of my tongue, right jaw, and teeth were removed. Cancer-free for 6 years now and counting. My speech is clear enough to return to my job as a 911 operator.
Symptoms: painful lesion lateral tongue.
Radiation and chemo gave me nine years cancer free. Surprise diagnosis at 54, HPV+ tonsil cancer, with reoccurrence within a year. I refuse to let the cancer dictate my life. My scars are ones of a survivor, NOT a victim.
Symptoms: Tip of tongue was numb. A sore developed on left side within the year.
I quit smoking before first surgery with neck dissection. No spread so no radiation. My oral surgeon urged me to travel north to seek the best care possible. I got a second opinion at John Hopkins, Penn, and Dr. Urken at Beth Israel whom I ultimately chose.
Oral cancer has altered my world, affecting me physically, mentally, emotionally, socially, financially and much more. The bottom line is, I live from a place of gratitude. I want to thank Eva for all her hard work and support she has given me.
Symptoms: persistent sore on tongue and pain
Surgery, Chemo, Radiation. Recurrence three years later to base of tongue. I do not have insurance to go outside the area for treatment. The lesion left by my trach doesn’t want to heal, but I don’t want to do hyperbaric oxygen again because I believe it escalated the growth of the cancer the first time. I am taking speech, swallowing and physical therapy now and getting ready to go back to work part time. I know we got it this time!
I heard your YouTube rap which inspired me to write this:
“I’m a friend of Eva’s – she speaks eloquently
Her message, so important – it could have saved me!
Till I saw the right doctor, it was just a spot you see
Never knew the real danger, it was worse than stage 3!
Lost one half of my tongue, now my life’s an aggravation
Now I’m headed to the hospital for chemo and radiation.
The cancer’s real aggressive, treatment side affects are hell
I’m hopin’ and I’m prayin’ this time it’s out of every cell.
4 surgeries later, but I’m still here to say
You gotta listen to Eva, and be proactive right away!”
Detected by hygienist during routine oral cancer screening. Let’s give a ‘shout out’ to proactive hygienists!
Symptoms: Persistent ear ache and lump in neck.
25 year smoker, quit for 15 years. ACC is not caused by smoking. I was told even stage I is incurable. The resident said ,” Ohhhhh, ACC. At least you’ve got 5 years.” I was so mad, I blew up at the doctor. How dare anyone guess my life expectancy? I know two others diagnosed at the same time, and I am the only survivor. I’m two years post surgery/radiation. I am happy, healthy, raising my daughter, and enjoying each and every day. You are not the same after having cancer. My view on life changed dramatically. Stay positive. Stay focused on the good. Learn to recognize signs that your body sends.
Curt Flood (St Louis Cardinals)
Brett Butler (Dodgers)
Bill Tuttle (Famous Baseball Hitter)
Hubert Green (Golfer)
Jim Thorpe (Football)
Bobby Hamilton (Nascar Driver)
Donny Walsh (NY Nicks)
George Carl (Coach Denver Nuggets)
Diane Von Furstenberg
Colleen Zenk (Soap Opera)
Roger Ebert (Journalist)
Grant Achetz (Chef in Chicago)
George Harrison (Beatles)
Eddie Van Halen
Sammy Davis Jr
Peter Tork (Monkeys)
Adam Yauch aka MCA (Beastie Boys)
Hiram Ulysses Grant