- Oral Cancer
- Dentist / RDH
- Six-Step Screening
- Book Eva to Speak
Email a photo to firstname.lastname@example.org with this info:
First name, Age at diagnosis, Stage, Smoker? State of residence
Delay in diagnosis
Real stories remind dental professionals about the importance of screenings as well as educating their patients about the signs and symptoms of oral cancer. These stories also help people who have something abnormal in their mouths to take their symptoms seriously and be proactive about finding the cause.
If you’d like to contact a survivor below, I’ll do my best to put you in touch.
|Angela||37||Base of Tongue Clear Cell Cancer|
|Bob||57||Base of Tongue Cancer|
|Pat||58||Squamous Cell Carcinoma of the gum|
|Michele||39||Adenoid Cystic Carcinoma of Palate|
|Michael||50||Melanoma of the mucosal tissue|
|Steve||48||Squamous Cell Carcinoma of the gum and jaw|
|Jeff||50||Squamous Cell Carcinoma of the Floor of Mouth|
|Rob||41||Adenoid Cystic Carcinoma|
|John||55||Squamous Cell Carcinoma of Base of Tongue|
|Hector||50||Squamous cell carcinoma of the tonsil and oropharynx|
|Jennifer C||46||Squamous Cell Carcinoma of the right tonsil|
|Julia||69||Squamous Cell Carcinoma of Tonsil|
|Susan B||54||Tonsillar Cancer|
|Amy||28||Mucoepidermoid Carcinoma of the Salivary Gland|
|Michelle||41||Salivary Gland Cancer|
|Nadine||50||Salivary Gland Cancer on Mouth Floor|
|Janet||53||Adenoid Cystic Carcinoma|
Symptoms: Non-healing sore on tongue. Eventually, ear pain.
Treatment: Glossectomy of one third of tongue, neck dissection, radiation.
Delay in Diagnosis: Nine 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 carcinoma 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: Sore on lateral side of tongue which was red and indurated. The left lateral border of my tongue ‘puckered’. The difference between the two sides was noticeable when I extended my tongue. At the center of the puckered area was a vertical slit. It looked like a large paper cut, but did not bleed.
Treatment: Partial glossectomy, followed by further resection and selective neck dissection
Delay in Diagnosis: 6 months
I’m a pharmacist married to a family physician. I had a sore on the lateral side of my tongue on and off for 6 months. It would improve then flare up again. I brought up the ‘C’ word asking my husband if he had ever seen oral cancer. Yes, he told me, but my lesion didn’t look or behave like oral cancer. I googled oral cancer images and saw the words ‘lesion with hard border,’ and a little bell went off in my head. My dentist immediately sent me to an oral surgeon who said it didn’t look serious but would be happy to biopsy it. The final pathology suggested further excision to get a wider border so I went to MD Anderson.They said the depth of my tumor was borderline to recommend selective neck dissection, but I made the decision to have it done because I’m willing to risk the complications of surgery in exchange for a lower recurrence rate. During the neck dissection they found one tiny positive lymph node which they removed. No radiation is recommended at this time.
My question is not ‘Why did I get oral cancer?’ but ‘Why did I find it early when so many others find it too late?’ The answer? This website. God bless you!
Symptoms: Mass on left floor of mouth, followed by a hoarse voice, followed by a mass in right neck
Treatment: Bilateral radical neck dissection (23 out of 101 lymph nodes positive) and resection of the left floor of mouth, followed by radiation and chemotherapy
Delay in Diagnosis: 10 months
Last May I went to my dentist and asked what this mass was on the left floor of my mouth and why I keep getting food stuck behind it. He said, “Oh, that’s a tori, don’t worry about it. It’s common in people who grind their teeth.” So I went home and looked up tori on the internet and decided to ignore it. Four months later I developed a horse voice. A colleague at Sutter Medical Center scoped me and discovered my right vocal cord was paralyzed and said, “You have idiopathic recurrent laryngeal nerve palsy, it’s a post viral syndrome. Did you have a recent bronchitis?” I said, “Well, as a matter of fact I did.” He said, “Your voice should come back in about 6 months.” However, while I’m waiting for my voice to come back, I noticed a mass in my R neck and went directly to an ENT who did a fine needle aspiration and ultrasound. The tumor completely occluded my R internal jugular and obliterated the vagus nerve. During the time I had the mass on the floor of my mouth and a hoarse voice, it never crossed my mind it could be cancer. I’m a young 50, and bike, run or swim everyday. My dentist never performed an oral cancer screening during routine visits. I had my surgery at Stanford Medical Center.
I just want to say, Eva, that you were hugely influential in my life this past year, more than you know. I needed somebody who had been through this to talk to me, tell me I can do this thing. And you were there. Your kindness, motivation and inspiration were important in my surviving this ordeal. Knowing that you pulled through this same enormous assault with such grace and came out of it so beautiful, articulate and together … THAT was inspiration!
Symptoms: Sore on tongue.
Treatment: 1/3 of my tongue was removed with a selective neck dissection. Results: clear margins and no node involvement, but indicated perineural nerve invasion (PNI). Pathologically I was diagnosed as stage II, but clinically I was stage I. Because of the PNI, I went for 7 weeks of radiation.
Delay in Diagnosis: 2.5 months
I noticed the spot when I was 21. They told me I was biting my tongue. It didn’t hurt, but it didn’t go away and spicy foods aggravated it. At age 26, the lesion started to hurt and look bigger. My dentist said I was stressed and to take B12. After 2 months, I scheduled an appointment with an oral surgeon who biopsied it right then and there. I thought she was going to tell me I needed antibiotics – never did I suspect cancer. They tested the tissue for HPV, and it was negative. I asked her if I was going to die, and she couldn’t answer me.
The night before my surgery I found a video of you online as well as a video of Lindsay Nohr Beck and I wasn’t as scared anymore. You are one of my biggest inspirations
My family was not supportive of surgery (they were in huge denial.) I had to muster up the courage to go through it myself. They did not even support the radiation treatments. I had to drive myself every day, avoiding taking the pain medicine as long as I could. About half way into radiation, I broke down crying because of all the pain, so my mom said she would drive me. That day literally was amazing. I was very proactive during my treatment: I went to Physical Therapy, Speech Therapy, Accupuncture and support groups.
My radiation treatment ended on August 14, 2012 (two days after my 27th birthday.) I’m making it my goal to help other young patients be brave through http://www.bravelybeautiful.org. Thanks for posting my story.
Symptoms: Sore throat and difficulty swallowing
Treatment: Radiation and chemotherapy
Delay in Diagnosis: 5 months
John had a sore throat and difficulty swallowing, prompting three doctor visits who repeatedly told him it was allergies. After 5 months he finally saw an ENT doc who did a biopsy and he was diagnosed with squamous cell carcinoma of the base of tongue. Torturous treatment followed by loss of his swallowing function and taste, a feeding tube and massive weight loss never prepared us for the news that it had spread to his lungs. 18 months after diagnosis I lost my dear husband of 34 years. I believe if he had been prompted to see a specialist earlier he would still be with us today.
Symptoms: Sore on tongue followed by small mass under chin
Treatment: Reconstruction of 1/3 of my tongue, neck dissection, radiation, chemo
Delay in Diagnosis: 1 month for first surgery, 8 months for second surgery
I was diagnosed with oral cancer in October of 2012. I had a small sore on my tongue that didn’t go away for a few weeks which led me to seek medical attention. A few weeks later, I had a partial glossectomy and 1/3 of my tongue removed. Everything was fine until I found a small mass under my chin 8 months later. I then had the neck dissection. The pathology reports indicated that 3 of my lymph nodes were positive for invasive squamous cell carcinoma. All three had extra-capsular spread.
Symptoms: Sore on left side of tongue
Treatment: Reconstruction of the left 1/3 of my tongue, skin graft and artery taken from my left arm, and skin taken from my left thigh
Delay in Diagnosis: 4 months
I thought it was just a canker sore. When it didn’t go away, I went to my primary doc who sent me right away for a biopsy. I am so thankful and lucky to have been pointed in the direction of Beth Israel Head and Neck Center. They are the most compassionate, human, caring doctors that I have ever been privileged to know. Every day is something to be appreciated and looked at as special, because I am here and not going anywhere!!
Symptoms: Loss of three teeth on the bottom left side of mouth
Treatment: Surgery to remove the lower jaw, radiation
Delay in Diagnosis: 3 months
Oral cancer saved my life. I was 325 pounds, a diabetic and on heart and blood pressure medication. Now, I no longer take any medication and weigh 175, but oral cancer took a big chunk out of the quality of my life. It started with a tooth that just fell out and another one a month later. I had no pain – they just popped out. In August, when the third one became loose, I called an oral surgeon. He pulled the loose tooth and biopsied the tissue. After some more tests with a Head & Neck Surgeon, I was diagnosed at Stage IV. I had 6 surgeries and most of my jaw was removed. I use a feeding tube and can swallow soft foods, but I cannot drink, even with a straw. I must use a syringe to force it down my throat. But, I’m cancer free and life is worth living!
Symptoms: Swollen lymph node, constant sore throats
Treatment: Surgery, chemo and radiation
Delay in Diagnosis: One and a half years
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: Nose bleeds, Watery eye
Treatment: Surgery to remove “softball” size tumor in sinus area, IMRT Radiation
Delay in Diagnosis: Two years
I’m a five year survivor of stage IV Adenoid Cystic carcinoma. I’m thankful for great doctors at I.U. Health and St. Vincent Hospital. Very long recovery time but doing well. Longtime survivorship with many issues from surgeries. Had 8 weeks of IMRT radiation after surgeries and think it saved me. I was a non-smoker and want to let you know you can get cancer without smoking.
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: Persistent lesion on right side of tongue, started as a small ulcer. Gradually spread to just under 4cm in size over 3 year period.
Treatment: Partial glossectomy, April 2013. One third of my tongue was removed which returned positive pathology for squamous cell carcinoma. Within two weeks I was back in surgery to increase the tongue margin (now hemi-glossectomy), forearm free flap reconstruction and selective lymph node removal. Lymph node pathology came back clear so no further treatment required.
Delay in Diagnosis: 3 years
I am a healthy-living, fit person who smoked briefly as a teenager and up until 2013 was a fairly regular, moderate red wine drinker. Two tongue biopsies were negative for cancer over 2 year period. Specialists looked everywhere for root cause of dysplasia – allergy testing, dental stent, auto-immune disorder…all to no avail. Biopsy in third year returned result of Squamous Carcinoma In Situ vs Squamous Carcinoma. I endured a partial glossectomy without reconstruction in order to confirm cancer. Even though I alerted a team of specialists to this early, it still managed to have them perplexed for 3 years, in part because I am not within the ‘normal’ statistic for this disease.
Symptoms: An occasional sore throat with a raspy voice.
Treatment: Surgery(I had two as my forearm flap failed), followed by seven weeks of chemo and radiation.
Delay in Diagnosis: 2 months
My dentist first noticed an irregularity doing an oral cancer screening during my routine visit. He saw that in the back of my mouth, on either side of my tongue, the two sides didn’t look the same. He insisted that I not leave his office without an appointment with an oral surgeon. I had a biopsy two days later and received a cancer diagnosis one week later. It took several weeks for a definitive clear cell diagnosis because of its rarity. I was initially told that the cancer took up more than ½ of the base of my tongue and was encroaching on my voice box. I had surgery scheduled to remove my entire tongue and possibly my voice box, but cancelled it to seek a third opinion elsewhere. The third opinion suggested that the tumor board mis-read my scans and also did the endoscopy with me lying down(as opposed to sitting up), which made the cancer appear to be closer to my voice box than it actually was. Can you imagine the quality of life difference between having and not having a tongue?! That third opinion resulted in a determination that they could save half or more of my tongue. Today, I speak almost normally with no feeding tube or trach. I just had a third surgery to help alleviate long term pain. I am cancer free almost two years later!
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. I had surgery on my tongue but no chemo, radiation or neck dissection was needed. It was 2005. In 2010, I had pain in the same area which was dysplasia and they performed 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. Dysplasia was diagnosed again but required no further treatment. Two 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!
Symptoms: Persistent and painful ‘ulcerated’ area on side of tongue, eventual unbearable ear pain.
Treatment: 1/4 of tongue removed
Delay in Diagnosis: 8 years
For years I had persistent and increasingly painful ‘ulcerated’ area on side of tongue with eventual unbearable ear pain. Eating and talking were excruciating. I went to numerous health care professionals, including ENTs (twice), dentists, and finally an oral surgeon who did a biopsy on the spot. I remember the last dentist couldn’t do basic x-rays because it was too painful. I had about 1/4 tongue removed. My lymph nodes all clear so no radiation or chemo. They tell me my story is nothing short of a miracle.
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!
A sore on my mom’s tongue was not initially treated by her dentist. After several months, a biopsy done on the sore came back negative. By the time my mom saw an oral surgeon the cancer had spread to her lymph nodes and was stage IV. The first surgery removed over half of her tongue and the lymph nodes in her neck. My mom had reconstructive surgery using veins from her forearm and skin from her hip. She was treated with radiation and fortunately was in remission for five years. The cancer returned in 2009 and never left. My mom endured over eight surgeries, the last of which left her unable to eat, drink or speak. She had chemotherapy but the cancer still continued to spread. Even up to her final days in the hospice my mom never gave up. After a nine year battle, my mom passed away on August 27, 2011.
Jeremy’s sore was not recognized by his dentist. It became increasingly painful, affecting his ability to talk and swallow. He was diagnosed by ENT October 2007 and lost 75% of tongue in surgery November 2008. He was 32 years old when he passed away. Father of 2 boys, and an incredible athlete! Wonderful talent 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: Two 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. On October 25, 2012, I celebrated 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 Registered Dental Hygienist My brother-in-law is an ENT. At Christmas, I showed him the spot on my tongue 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 who 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 two 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 followed by a sore.
Treatment: Surgery and radiation, but no chemo.
I met six 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 Head &Neck 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 age 35 and pregnant with my fourth child, I was diagnosed with stage I SCC of my tongue. Four years after surgery, I had an irritated white area on tongue but the biopsy was 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!
Symptoms: Ill fitting dentures with pain, irritated gums, headaches, and eventually an ear ache.
My mom visited a dentist shortly before my wedding about her ill fitting denture and pain. A couple of months after my first wedding anniversary, she was diagnosed. Three weeks after surgery, the cancer returned. She lived only six months after her diagnosis. No one in our family knew anything about oral cancer or that it even existed.
Symptoms: Painful lesion on tongue, ear pain. At recurrence six months later I had a lump on my neck the size of a golf ball.
Treatment: Partial glossectomy and neck dissection. After recurrence, neck dissection and removal of parotid gland as well as 8 weeks chemo and 37 rounds radiation
Delay in Diagnosis: 3 months
One month and one day after I was married I found myself sitting in the waiting room at one of the local hospitals waiting for my name to be called into a biopsy surgery on my tongue. Two days before Thanksgiving I was diagnosed with Squamous Cell Carcinoma on the left side of my tongue. My husband and I were baffled at how I could be diagnosed with cancer at the tender age of 23. The holiday season of 2008 flew by, filled with doctors appointments. After getting several opinions I decided to have a radical neck dissection and partial glossectomy. I was released from the hospital with good news on Christmas day. I was told that there were clear margins around the tumor they removed from my tongue, and out of 37 lymph nodes that were removed from my neck there was only 1 positive node, and it was only one millimeter of cancer and still encapsulated. So it looked as though my husband and I would have a great start to 2009! I decided to go back to school and get my degree in radiography. I had a PET scan done in June of two separate areas the doctors were concerned with. In August I had a bilateral neck dissection where the doctors found that the cancer had wrapped itself around my parotid gland and had spread to a lymph node in the opposite side of my neck. After a short recovery in the hospital I started gearing up to begin chemo and radiation. It was quite possibly one of the hardest things I have ever been through and thankfully I had a wonderful support system to help me through it all. I finished eight rounds of Chemo and 37 radiation treatments on November 19. 2009, exactly a year since I had been sitting in that hospital waiting room waiting for a biopsy.
Symptoms: Shooting pain between ear and jaw, attributed to my TMJ.
Delay in diagnosis: 6 Months
During 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!
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. The pain persisted. Another ENT biopsied a spot on my palette and on back of tongue, both negative, and removed my left tonsil, saying it was embedded and the source of my pain. Pain persisted. Four 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 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’d 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. Seven 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
David 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, active person and didn’t think a canker sore was a necessary reason to visit a doctor. After nine 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 six times during one 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 along with 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.
Delay in Diagnosis: 5 Months
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, one 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 III 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 six years now and counting. My speech is clear enough to return to my job as a 911 operator.
Symptoms: Painful lesion on 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.
Four 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.
Symptoms: Sore that wouldn’t heal.
Treatment: Surgery to reconstruct left side of tongue and neck dissection
Delay in DX: 1 year
When I awoke in the ICU, I tried to gain my bearings then I remembered where I was. As I tried to catch my breath, I realized I was not breathing through my mouth but through a tracheotomy. Panic set in. My wife and the nurse calmed me down until I could “catch” my breath. This was the first moment in my new life as a survivor. When stationed in Iraq, I had a cold sore that came and went for 3 months. In Sept. 2009 it came back and stayed. It went untreated for 12 months and during that time I had 15 dental visits for teeth cleaning and crown work. At no time did I receive an oral cancer screening. The sore was very visible, the size of my thumb. During one visit, the dentist hit the sore with an instrument as I yelled out he said “sorry” and nothing else. I finally saw a specialist but by this time the lymph nodes in my neck were positive for squamous cell. My story doesn’t end here but I will continue to tell it to spare others from the same.
Symptoms: Pain when brushing teeth.
Treatment: Multiple surgery, chemo, radiation.
Delay in DX: 1-2 years
I underwent 2 painful periodontal procedures to address the pain in my gums when brushing my teeth. After the 2nd treatment failed, I saw an oral surgeon, whose first words upon examining me were:”Whoops!” I had few spots on the bottom left side of my mouth way in the back, and they weren’t easy to see. Melanoma is often confused with pigmentation changes due to the silver in fillings. Melanoma of the mucous tissue is extremely rare and difficult to diagnose. The prognosis is normally poor-but in my case it is not progressing. The major medical centers in NYC suggested radical, disfiguring surgery. I chose to be treated by Dr. Peter Costantino, Lenox Hill Hospital, whom I credit for saving my face, and my life. Knowing I was a chef, my surgeon tried to preserve as much mouth function as possible. The only really awful part of my treatment over 5 years was having a tracheotomy during one of my surgeries. I felt like I was gagging on my own juices for weeks. My doctor was caring and smart enough to devise a way to avoid having to do that again on a later surgery.
After the surgeries, I lost a lot of tissue and most of my teeth on the bottom of my mouth, and a small part of my tongue. Other than a slight speech impediment, and loss of taste on one side of my mouth, I remain vital and healthy, and still run a restaurant in the Berkshires. One side of my mouth droops a little. I have to cut food into small pieces, but I’m not complaining. I have quite a good red wine collection, which I sell, but don’t drink anymore. I have been cancer free for almost 4 years, and dying of old age is starting to seem more likely.
Symptoms: Swollen gland in neck.
Treatment: Two surgeries, 9 weeks of daily radiation and weekly chemotherapy.
Delay in DX: 2 months
I am cancer free 2.5 years. As I was recovering (not an easy journey as you know), I was introduced to Imerman Angels. It meant a lot to me to talk to a survivor of my same type of cancer, treatment and lifestyle. He helped me in many ways. Eventually, I started to volunteer for the organization and became a ‘connection specialist’, translator and spokesperson. Six months ago, the chairman and founder asked me if I would run the organization. What more could I want?? I went from VP of operations in the hospitality industry, to Brand developer for Apple, and now I’m managing Imerman Angels… Cancer is a good thing that happened to me! I love my life, my kids and the chance to help others so no one faces cancer alone.
Symptoms: Lump on the right side of my neck below my jaw. Felt like a popcorn hull in my throat. No pain.
Treatment: Robotic laser surgery followed by radiation.
Delay in DX: 3 months, but only because I was persistent. I was continually told, ‘it’s nothing.’
I’m a hygienist and I quit smoking at age 28. I take great vitamins, exercise,and have a boring health history. I thought the healthy lifestyle I chose was supposed to prevent this sort of thing. Shocking that I actually control nothing. The best advice I can give is get a second opinion. Not only was I offered a treatment that did NOT include Chemo, but the team approach for decision making included me. If I can help even one person to avoid this path, either by education in advance, or by early detection, then I will be overjoyed!
Symptoms: non-healing sore under tongue
Treatment: Surgery and neck dissection. No chemo or radiation.
Delay: 6 months
My docs said if I was a smoker and over 60, they would do a biopsy, but they insisted the sore under my tongue was nothing. I didn’t want to play guessing games with salt water rinses and topical gels. I’ve healed very quickly from recent operations so this non-healing sore just didn’t fit my profile. I persisted in finding a doctor who would biopsy and I’m so glad I did. Being a non-smoking, non-drinking vegetarian I thought I would escape a cancer diagnosis. Now, I’ve cut sugar from my diet and I’ve taken an Aboriginal medicine here called ‘the maron bush.’ It’s difficult to get hold of but people with cancer know other people with cancer and you find it. I have been on a programme from an alternative practitioner to detox my body and boost my immune system so that no secondary cancer returns. I have amalgam fillings in 3 teeth. My biological dentist and my alternative practitioner are working together to remove these in sequence so that my body is not harmed when the mercury laden fillings are removed.
Symptoms: Non-healing ulcer on lateral tongue, pain in tongue, swollen tongue and eventually a lump in neck
Treatment: Free flap reconstruction of tongue (after whole tongue removed), radical neck dissection, radiation and chemo
Delay: 7 months
My wife Ann visited a dentist, an ENT and two oral surgeons about the ulcer on her tongue. They all said to ‘watch it.’ It did not heal so one of the oral surgeons biopsied the ulcer, but the biopsy showed ‘no evidence of malignancy – but contained atypical cells.’ Ann continued to return to the oral surgeon complaining about the pain, but she was told her tongue was cut and it could take up to nine months not to hurt anymore and to just wait. The dentist suggested that Ann ‘hit’ her tongue and needed a mouth guard—two of which were made as they did not address the pain. Then, she saw a TMJ doctor who gave her an appliance to stretch her jaw. After an 8 month period, a lump developed in Ann’s neck. An MRI showed a mass and a fine needle biopsy diagnosed squamous cell carcinoma. Ann had extensive surgery and when she was almost finished with chemo and radiation therapy she came down with pneumonia. While a PET scan in February showed clear lungs, A CT scan of the lungs in May showed the cancer metastasized. Ann was transferred to hospice and passed away the following morning leaving behind three children in their pubescent years. Our loss is slightly lessened when we hear about how Ann’s story raises awareness. Recently, a friend who was just diagnosed with thyroid cancer told me Ann saved her life as the second she felt a lump in her neck she ran to the doctor.
Symptoms: Persistent headache and sore throat
Treatment: Modified neck dissection, radiation and chemotherapy
Delay in Diagnosis: 6 weeks
I had a headache and a sore throat that were so painful I had to take Advil everyday just to make it through. The only thing you could see was how swollen the left side of my neck would get when I was in pain. The cancer started behind my nose and then spread to the lymph nodes in my throat. If my mother had not kept pushing for my primary doctor to send me to the ENT, I would not be here today. I had a wonderful ENT who worked very fast to find out why my sore throat would not go away. He sent me for a needle biopsy and it came back with suspicious cells. The ENT then performed a surgical biopsy and took tissue from my neck and went up my nose and found the spot. Both tested positive for cancer. All of this happened in a course of two weeks from the day I first went to him.
Symptoms: White spot which turned into a sore on my tongue. When I had a recurrence, I had a bad earache and an ulcer.
Treatment: First surgery: small part of tongue removed and radiation. Second surgery – Free flap reconstruction and jaw split.
Delay in Diagnosis: 9 months first time. Recurrence was one year later.
It started as a white spot on my tongue and my dentist told me it could be from a dry mouth (although my mouth did not feel dry). The spot turned to a sore and the dentist gave me antibiotics and creams which did not help. After 9 months, I went to a different dentist and judging by his expression, I knew something was wrong but I never expected it to be cancer. I had clear margins after my first surgery but there was nerve invasion. Since the recurrence, I don’t like the way I sound, I can’t chew normally, and there are days I want to call it quits on life. I should be thankful I’m still here, but I’m afraid I may never be able to talk again and provide for my children. My current position is Administrative Assistant at a Mental Health clinic which I love as I work towards my MSW. I’ve always wanted to be a social worker as I love helping those in need…sadly at this point in my life I feel like I can’t even help myself. If only I saw a different dentist sooner!
Symptoms: Sore teeth
Treatment: Partial maxillectomy, removal of 1/4 of the roof of my mouth.
Delay in Diagnosis: 5 months
After having some sore teeth for a few days, I looked in the mirror and saw a large lump. It was not normal, but cancer didn’t cross my mind. One month later, I had a partial maxillectomy and lost 4 teeth, a quarter of the roof of my mouth and the adjacent jaw bone. I now wear an obturator. Five months prior to discovering the lump, I had an MRI of my head for something totally unrelated. The neurologist who ordered the scan called to say everything came back fine. I never saw him again. When my Head & Neck surgeon requested the scan and report, it stated, “abnormality in left oral cavity. Needs further evaluation.” No one ever told me and I never saw the report. Tough lesson learned! The size of the tumor from that original MRI was the size of a pinky fingernail. The size of the tumor at my surgery was the size of a golf ball. May advice to you: Get copies of all reports and scans!!!
My case proves malpractice, but I ultimately decided the stress of a lawsuit would not erase what happened or give me my mouth back. I focus on my recovery and continue to move forward with my life.
Symptoms: White patch under tongue. Recurrence (8 years later). Red irritated spot in same area under tongue which turned into a lump.
Treatment: Surgical removal of lesion with margins. With recurrence: neck dissection, partial glossectomy, radiation, chemo.
Delay in Diagnosis: 2 years
Contracting HPV is unlikely to have been sexually transmitted since my husband was my only sexual partner. Knowing the source of the infection is not important since it can never be determined. I noticed a white patch under my tongue. My primary care doctor promptly referred me to a oral surgeon who removed it. The biopsy came back negative for cancer but showed leukoplakia. It reoccurred 7 more times, with 7 more biopsies. Two years later, with the eighth reoccurrence, my oral surgeon sent me for a second opinion. It was squamous cell carcinoma in situ. 8 years later, a red irritated spot developed under my tongue. My oral surgeon told me I was biting it and he gave me a steroid injection. in 3 months, it developed into a lump and an indurated ulcer. I returned to the oral surgeon who said it was from the tonsillitis I just got over, and it would take several months to heal. Looking back, I should have trusted my instincts and gotten a second opinion. The next 3 months were so painful to eat. Finally I got another biopsy: Squamous cell carcinoma. I was referred to an ENT with fellowship training in head & neck oncology and microvascular reconstructive surgery. “Why did you wait so long? he asked.” He assured me this had been cancer the whole time. A lawyer said I had a solid malpractice case but I waited too long to pursue it. I focus on moving forward and cherishing life!
Treatment: Free flap reconstruction of tongue, neck dissection, radiation, chemotherapy (stopped after one treatment)
Delay in Diagnosis: He disliked doctors and never complained but probably at least a year.
Comments by his twin sister: His surgery was 17 hours and they took out lymph nodes and over half his tongue. Donor sites from his arm and thigh were used to reconstruct the tongue. 2 days later he was rushed back to surgery as the tissue was not getting proper blood flow. They took grafts form the other arm and thigh for another reconstruction. I believe if he had an early diagnosis he would be with us today. Five months later he had a recurrence and he declined rapidly but he was still cracking jokes the night before he passed away. He was a survivor of childhood leukemia. He was married for 30 years and had two daughters although they told him he would never have children because of chemotherapy during childhood. His favorite place to be was the garage fixing cars for family and friends. His wish was no autopsy but I believe that it would have been valuable to address our many unanswered questions.
Symptoms: Painless small soft swollen area on right side of neck.
Treatment: Radiation and chemotherapy
Delay in Diagnosis: Several months
While checking my heart rate with my fingers, I felt a small swollen lump that did not hurt. My family physician said it was a swollen lymph node from a sinus infection and gave me antibiotics. Several weeks later, I checked the spot again and it hadn’t changed. I called the doctor. “Leave it alone, it will go away.” Something kept making me check the area often. I decided to go to an ENT who did a needle biopsy which was negative. I went to another ENT for a 2nd opinion. He noticed one tonsil redder than the other and prescribed a different antibiotic. He said, “Let’s watch it and see if it goes away.”
Several months later the spot was still there. My husband shined a flashlight down my throat. My tonsils still didn’t look the same. I wanted my tonsils out! Both ENTs were totally against it because of the risks to someone my age. I persisted and he reluctantly agreed. Guess what? Under the right tonsil was squamous-cell cancer, which by then had spread to my lymph nodes. I suffered all the effects of the radiation/chemo, had to have a PEG feeding tube for about a year, was so miserably weak/sick I decided to retire from my job that I loved (after 35 years).
I’m 6 years cancer free, but now I have a constant putrid taste in my mouth. Doctors think it’s a drainage problem from radiation. Just like last time, I’m going to persist until I find an answer!
Symptoms: Cyst in neck then three year later, an ulcer on roof of mouth near the left tonsil.
Treatment: Radiation for SCC cyst in neck. 3 years later, I had surgery, proton therapy and chemo for the SCC on my tonsil. When a panendoscopy showed cancer, I had a neck dissection and the left side of my palette and small area at the back of my tongue removed. I begin cyber knife treatments soon and maybe more chemo.
Delay in Diagnosis: Not sure. If I was treated by a specialist the first time, they may have found the primary, removed my tonsil three years earlier, and I would not have had a recurrence.
I had excellent oral health and visited a dentist every 6 months. My advice: if you have cancer or even a pre-cancer or suspicious area, get a second opinion from a specialist. Now, I see Dr. Daniel Karakla who did a fellowship in head and neck oncology. How would my life have been different if I saw him three years ago when I had an enlarged lymph node in my neck? I’ve been managing with my trach and feeding tube, feeling better everyday. I want to do whatever I can to raise awareness. In fact, I have inspired so many people to ask for screenings, and now two people I know are getting a follow up. Soon, I will get back to my bike-riding and my garden. My husband, friends, children and 5 grandchildren have been a true blessing.
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 (Monkees)
Adam Yauch aka MCA (Beastie Boys)
Hiram Ulysses Grant