Dear Eva,
Nine months ago I asked my dentist about the lesion on the floor of my mouth. He said it’s ‘tori’, a bony growth condition caused by grinding and stress. “Don’t worry about it.”Four months later I developed a horse voice. I am Vice-Chief of Anesthesiology at a cancer center so I asked a colleague to scope me. He discovered my right vocal chord was paralyzed. My doctor said, “Oh, you have idiopathic recurrent laryngeal nerve palsy, a post viral syndrome. Did you have a recent bronchitis?” I said, “Well, as a matter of fact I did.” He said my voice should come back in about 6 months.While waiting for my voice to return, I noticed a mass in my right neck and went directly to a well reputed ENT who said I need a fine needle aspiration ASAP. Ultrasound showed this thing completely occluded my right internal jugular and obliterates the vagus nerve. Path showed poorly differentiated squamous carcinoma.
To make a long story short, nine months after seeing my dentist about the growth on the floor of my mouth, I was diagnosed with oral cancer. It spread to both sides of my neck.
My surgery was eleven hours followed by 3 nights in the ICU, and 3 nights on the post-surgical floor. I had bilateral radical neck dissection and resection of the left floor of my mouth. They had to sacrifice my right internal jugular and right vagus nerve (so my right vocal cord will always be paralyzed). He was able to get clear margins and not have to do the forearm free flap graft, a whole other stratosphere of surgical complexity I was not keen on entering into. He closed the floor of my mouth using available local muscle flap and Tisseal. He is a very conservative guy and does not want this suture line disrupted or it’s back to the O.R. for the forearm graft. I am on my best behavior, believe me.
I would love IMRT, like you had, and hopefully salvage my right salivary gland, like you did. I will discuss that with my radiation oncologist. Thanks for sharing that info on Six-Step Screening.
I’m scared, Eva. I’m 50 y/o, non-smoker. How did this happen to me …? I hope my story plays out like yours. Thank you for your inspiration.
I wrote back:
‘Dear Jeff, I’m sorry to say, your story is NOT uncommon. I’m curious if it ever occurred to you that what you had could be cancer. For me, 15 years ago, I never heard of ‘oral cancer’. My husband is a radiologist, my dad a cardiologist. I complained while experiencing the pain of the non-healing ulcer on my tongue, but no one knew what it was. They kept saying, “Go to your oral surgeon again.” The problem was, my oral surgeon didn’t know what was staring at him. They kept asking me if I smoke. When I said, ‘No, never,” I was told ‘Then, it’s nothing.’ Actually, a non-healing sore in a NON-smoker is far more serious than one in a smoker who continually irritates the oral tissue. Why didn’t my dental providers ask themselves why a non-smoking healthy individual would have a sore that just won’t heal? If they questioned the biopsy, they would have learned my sore was pre-cancerous, moderate dysplasia.
One of my major messages at lectures is that it’s a dental professionals OBLIGATION to educate patients. Clearly your dentist didn’t rule out cancer as a possibility. Same with the other doc. I’m sorry. I work hard to prevent just this from happening to others.
Oral cancer is becoming more and more prevalent. Part of my mission is to get it on the radar! Just like we know what to check in our breasts and on our skin, we need to know what signs might be in the mouth. The mouth is the window to the health of the whole body. Part of the problem is that ‘medical’ doesn’t include the mouth: The mouth is ‘dental’.
I looked up ‘Tori’. Do you grind? Were you under great stress? Quite honestly, when your voice was hoarse, with the mass under your tongue, you had classic signs.
You may feel comfort in reading Dr. Itzhak Brook’s book on his oral cancer. He is from Baltimore and a physician. He went to docs that he was comfortable with….but not the best in the field and he talks about the continuous medical errors all along the way. You will enjoy listening to his lecture in Texas on YouTube. It’s inspiring and brings hope. It’s worth the watch! He had larynx cancer and lost his voice box. So, you need to watch the one hour talk while resting in a quiet room, (which I hope you are doing plenty of!).
I would be happy to speak to your wife about organizing the support network, and how to best manage the friends, calls, visits…that will undoubtedly come your way…because you sound like a great guy who has a LOT of friends. And, I have lots of suggestions. After all, I’ve been through the same and no one can give you advice like someone who has endured the same devastation to such a critical and public part of the body.
Also, please forward your address. I want to send your son a little gift, my books and my storytelling CD. The books are everything I wished my young children had when I was going through ‘it’.
I’ll conclude my long letter with a tidbit of inspiration: After surgery, every day you get a little bit better, and when you are getting better, there is hope. When there is hope, you can forge on.
Write again when you feel up to it.
Eva
PS Did you get an oral cancer screening at your regular dental check-up?
Eva, I never got an oral cancer screening. I wouldn’t be in this situation if he did. This lesion was down in the left floor of my mouth, hard to see, it probably did look like ‘tori.’ But, I even pointed it out and told him it recently developed there and food was getting stuck behind it.
We play the cards we’re dealt and we move forward using strength, courage and inspiration (you).
I have no apprehension in countering this, defeating it, healing and returning to work and play. My surgeon is a fierce cancer warrior and a stud surgeon. My care was phenomenal. They are so professional with incredible depth of expertise….a great first start to defeating my foe.
Tomorrow, we head back to the Head & Neck Clinic to get the staples removed, review surgical pathology and chart the course forward. Heck of a ride, Eva. But it is every bit the pitched battle with your foe and the strongest, smartest combatant will prevail. I am blessed with a wonderful and strong wife with a great attitude, smart son … who is still adjusting to it all and is not sure yet why I’m not the dad now that I’ve always been before.
Your web site was recommended to my wife by a fellow attorney who had a family member go through a similar event in their lives and succeeded. We both agree you seem like an amazing and inspirational person at a time when we find ourselves gravitating to strong survivor stories just like yours.
‘Jeff, I’m really proud to know you and your attitude. Not everyone has ‘it’, you know, the ‘I-can-do-this’ perspective. I had it to start, but began to loose it when going through the treatment. I’m glad you reached out to me so I can help you get through the low swings. You know, these days treatment is more targeted so you may not experience the hell I did. Chemo isn’t so bad. But, since you are probably getting radiation to your neck and throat, both sides, it’s gonna…..rock you to the core.
Then, there is your wife and son to consider. You may want to line up a therapist for your son; someone to whom he can express his anxieties without worrying about hurting feelings. He will need an outlet. My books will help. They are everything I wished my children had.
You will need to encourage your wife to have time away from caring for you so she can have renewed energy to come back to it….a spa weekend with girlfriends while their husbands look out for your well-being, time to do things she loves….If she wants to call me, I’d be happy to talk. Just remember the time difference.
Lastly, it would be an honor to meet you all in person. I’m lecturing in March in a town an hour or so driving distance. It would be nice to meet for..a liquid lunch afterwards if you have the time and feel up to it.
Eva
PS Did it ever occur to you that what was developing in your mouth, and then your throat, and then your neck… could be cancer?’
Eva,I am getting a maximum dose of radiation. In 5 weeks, I start a 6-week course. I’ll also get chemo with cis-platinum. It’s been quite a ride, like a speeding freight train. Five year mortality on this is about 50%. BUT, that’s all comers including those at high risk: elderly, smokers, dippers and drinkers.
I have to be honest, even though I’m in ‘the business’ working at a cancer center, having cancer in my mouth never occurred to me: I’m a young 50, work out everyday: biker, runner, swimmer, non-smoker.
Depending on how I feel on March 2nd, the three of us (if it’s appropriate content for a 9 y/o) would like to zip up to where you are speaking.
‘Jeff, Were you tested for HPV?’
The path did stain HPV-16 positive. I had a wicked mouth infection ~ 7 years ago: vesicles (fluid-filled blisters), and pain, like a nuclear bomb went off in my mouth. I went to my doctor who said I must have Hand-Foot-and-Mouth Disease, contracted from my son’s day care center. What ever it was, it was significant and I think somehow related to all this. It’s also possible I caught it from work. I deal with people’s airways all day long: gloves, wand washing, etc, I’m still exposed.
‘Luckily, treatment for an HPV+ cancer has a much higher cure rate than HPV negative. With surgery, every day you get a little bit better and when you are getting better, there is hope. Keep your spirit high!’
I’m trying. I’m sort of in the post-op doldrums now. I’m ‘convalescing’ with fresh Franckenneck surgical scars and a feeding tube in my nose that is backing up a bit. I feel good enough to take longs walks down to the river with my dog (she’s loving it, never has so much attention). But still have this nose hose in and can’t talk but with a crooked whisper. I just don’t think a boy’s dad should be walking around the house with a hose coming out of his nose. But that’s a pride thing. I know, there’s more to come.
‘Ann, I thought I would copy you on this email about how Jeff could feel better about his ‘crooked’ voice and nose tube while in the presence of your son. I’ll bet this email will generate ideas from you both.
IT’S ALL ABOUT THE GAME. THE FUN.
Find a cute game with the nose hose. Decorate it with Aran. Use pipe cleaners and make a piece of art with it, take a pic, and make another one the next day. Play ‘Guess the Noun’ a game where you act out different animals or things you could be while using it. Make it fun for him so he smiles and makes positive associations when he sees you.
I remember a girlfriend who had a feeding tube thought it was unsexy, but when she swung it around like a piece of lingerie, her husband laughed and they had ‘fun’
My daughter didn’t kiss me for two years after treatment. I believe she was afraid of losing me so didn’t want to commit to another day of loving me. Therapy didn’t work, but my game did. “The Smallest Kiss In the World’ put us back on the road to recovery.
For your voice, begin to tell a series of stories of this hoarse voiced character…different ways he became hoarse and how he learned to love it. How it made life better…people really listened to him, frogs had a party in his throat and he loves parties, he can’t yell at the idiot drivers anymore and how he learned to listen instead of speak…. Write a collection of stories with your son and let him come up with ideas about how a whisper can be a good thing! Then, together you can illustrate the stories.
You like to bike, so make an analogy about the chain coming off the gear on one wheel. You like to run, so tell the story about slipping, falling on ice, and make the analogy about different terrain and how you cope, just like you do with your voice.
I hope this helps. My two children’s books are in the mail for your son. Read them together. It will open the bridges of communicating feelings and answering those difficult questions. Eva’
Perfect. All great ideas! You’re really good at this kind of thing, aren’t you?
‘Jeff, I’m great with kids. For 25 years and I’m still going, I’ve been performing internationally as an interactive storyteller. I make kids feel like a star….no matter what. Even if they are physically or verbally impaired, when they are on my stage, they shine. Believe it or not, I do the same with adults. I love performing these interactive shows, but the fees I can command are so much lower than speaking, it’s taken a back burner position. I have so many projects I want to launch: producing a music video of my rap about oral cancer, publishing another book for children and one for young adults about coping skills and communication strategies. I wish I had a large company foundation to back me up!
Jeff, may I share your story on SixStepScreening?’
Eva, I’m totally with you on getting the word out to the world about this disease. And in the end, no one is going to jump up and down and make noise about that lesion in your mouth but YOU. And you can’t do that unless you are aware that it’s even a possibility! The least I can do is let you tell my story. With the great dentist I have now, together, we hope to do more.
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Hi Jeff,
I am so sorry for what you are going through now. Sadly, my story was very similar. Both my dentist and oral surgeon did not know what my sore was until the oral surgeon finally decided to biopsy it because he really didn’t know what it was. I was diagnosed 2 years ago this month, and I am here to tell you that it is a very difficult journey, especially the radiation, but you will heal and move on. Stay positive!
–Melissa
I had benign leukoplakia in the left cheek for a couple of years. It changed to a non-healing ulcer just inside the left corner of the lip. I went back to my cancer specialist for a biopsy. He sent me to a dentist saying – allergic reaction to amalgam filling (which I’d had for 45 years). Dentist would not give me dx but referred me to cancer specialist who asked my GP re urgency and gave me a 6 month appointment. Over the next 5 months I saw 4 GP’s and another specialist who said he would cut it out but might not get it all, would sew me up and I would be sore for a while. Not good enough, a friend who was following my story moved me from country Australia to Newcastle NSW where I had radical full depth surgery removing a 10cent size area from my cheek at the corner of my mouth, sliced away the leukoplakia, removed 3 teeth,left neck dissection (cancer in first node), patched face with wrist graft and forearm tendon, patched wrist with thigh graft and a few weeks later had 30 sessions of radiotherapy. That was in 2011. In Nov 2012 my right tonsil showed on PET scan so they whipped it out first thing. Biopsy showed fibrosis due to rads. Doing well now but coping with much pain on a daily basis, but at least I am still here, thank God! 🙂
Author
Pamela, thank you for your story. We are honored that you’ve shared it. We would love to give others hope and educate readers by posting your story in the Oral Cancer tab on the ‘Faces of Oral Cancer’ page. Want to forward a pic? By the way, do you have a pic of your cheek before all the surgery? When I speak, I show photos, and dental professionals really appreciate seeing what it looks like. Be well, and stay in touch. Eva
Eva,
I read Jeff’s story and am so glad that he and his family have your support and encouragement. It is disheartening to think that medical/dental professionals don’t always take the “signs” seriously at the earliest point possible, even if a biopsy turns out benign. It is better to be safe than sorry! The patients I have referred to Oral Surgeons (sometimes against former employer’s recommendations) have thanked me profusely when the Oral Surgeon removed their lesion and told them they were lucky to have a dental hygienist who was looking out for their best interest. Thankfully my current office makes oral cancer screening a priority.
We MUST keep getting the word out!
Keep up the great work!
Sandy
Why is oral cancer so often invisible in plain site? Even to physicians and even to physicians who deal with cancer? Thank god for Eva and people like Jeff, Melissa,and Pamela willing to share their stories so that the possibility will be brought to light and be recognized more frequently – thereby saving more lives.
My stage 4 tongue cancer went undiagnosed for months. My dentist and doctor failed to see that my tongue when stuck out went all the way to the left. I didn’t say anything as I thought they were the professionals and they seemed unfazed. My GP told me she thought I had sinus problems and on the 2nd and 3rd visit blamed it on allergies. I told her on my 3rd visit that I was scared I had a tumor and she blew me off. At the 4th visit she was on vacation, and I was seen by her associate. I complained of having severe ear pain. She sent me the very next day to an ENT who stuck his finger down my throat and promptly said that I had a very large mass on my tongue and it was cancer confirmed by a biopsy and scan. By then, it was Stage 4 with mass at the base of tongue and 3 positive lymph nodes.
35 radiation treatments, 6 chemos, but no surgery. Throat therapy lasted 2 months and I had two ‘stretches.’ Now, I am almost back to normal. Two years and 2 months out of treatment.
My new dentist has every patient stick their tongue out. My story has saved lives! He has found two other head and neck cancers since me.
Mine cancer was determined to be from decades of smoking (I had quit a year before I was diagnosed). HPV was found in my mass, which took my chances of survival from 60 to 80%.
Please be sure you get a thorough oral cancer screening. Have your pre-teens, boys and girls, vaccinated against HPV. Head and neck cancer is fast on the rise due to this virus!
Thank you for sharing your story and for reinforcing the importance of screening!
Thanks Eva for all your stories. Mine is similar. I’m a dentist and I never smoked, chewed tobacco or drank alcohol. 20 years ago, I self-diagnosed erosive lichen planus exacerbated by certain foods and hot spices. 10 years ago, the tissue was changing. My biopsy confirmed squamous cell carcinoma stage 3-4. My surgery included a forearm wrist graft, neck dissection, and graft from my thigh. I declined radiation since my margins and lymph nodes were clean. It took 3 months to start feeling “alive” again.
Attitude, support, and friends are invaluable in fighting this disease! I thought I had “an attitude of gratitude” but cancer enhanced my perspective on life! I have had 4 more surgeries. I drool a little but can still talk. I had to learn how to kiss my wife again (not at all unpleasant!) There is hope; never give up! 10 years has meant seeing 3 more grandkids, and this summer the first grandson getting married. It was all worth it. Pain, yes, but many blessings too! Dr Tony DiBiase, Damascus, MD