You asked for it, Brian, and here it is!

My former middle aged dentist had a red spot in the back of my mouth pointed out to him by his young hygienist. He told her and me that it was just from the misalignment of teeth and was nothing to worry about. So I didn't. UNTIL, I read an article about OC, which I didn't even know existed, took a flashlight, and found the red spot had become a tumor.

I would like to send an informative book to this dentist so that he can be more aware. If there is one book better than others, I would like to know about it, please.

Joanna

We should continue this thread with more "misadventures" if anyone has them to post. As to the book, please go to our page of books for professionals, and the Silverman book is an excellent choice for dentists. http://www.oralcancerfoundation.org/educational_materials_products.htm

Joanna, did we go to the same dentist? Last May, Before I moved to China I did one last visit to my U.S. dentist for checkup, etc. Had a slight burning sensation on my tongue, but also, my dentist said it was tooth irritation, and was more intersted in doing extensive peridontal work that I didn't need as it turns out.

Just had the old teeth cleaned, and went on my merry way, assured that it was just an irritation from a slighly sharp tooth. Fast forward to August, when the irritation didn't go away went to dentist in Hong Kong. On top of discovering I didn't need the peridontal work, dentist looks at the sore spot on my tongue and decides that maybe it might be a good idea to see an ENT. Sets me up to see the ENT, who decides that even though I have a history of lichen planus, might be a good idea to do a biopsy. The rest as they say, is history.

I'm headed back to the states for Chinese New Year vacation, I'm half temped to make an appointment for check up and cleaning with this clown, see if he actually NOTICES I"m missing half my tongue!!!

He'll just want to do more peridontal work though.
Bob

Hi all, it isn't just dentists either, my husband woke up one morning with an egg size lypmh node on the side of his neck under his chin. Got right in with his doctor who wanted to rule out cancer. Sent him to an ENT the next day. The ENT said it was just a pulled muscle!! Gave him steriods and said come back in two weeks. Well Dan went back in two weeks and the Dr said "Hmm was that lump that big two weeks ago?" Dan assured him it was. Well he decides to do a biopsy the following week. When Dan went into the office the Dr had tears in his eyes and was too shocked for words, said he didnt' fit the profile, under 40 non smoker etc etc. I thought the doctors were well aware that if it looks like a duck it is probably a duck?? I just don't understand the way they think.
Oh well, the ENT sent him to a great surgeon (wasn't sure why he didn't want to do this himself) Went to new ENT on Monday, Oral biopsy on Tuesday and the following Tues he had his Neck dissection. Radiation and chemo followed and has been cancer free for 1 1/2 years.
Dans dentist does a better job at checking him that the first ENT did.
Thanks for letting me vent....
Off to watch the Super Bowl.
Sherrie

I agree with Sherrie Lynn - it's not always dentists who don't catch things they should be aware of, it's also doctors - doctors who don't want to spend time with their patients or who only half-listen to the patient when they come in for a check-up. When I belonged to former HMO (my husband was under my insurance plan) - our doctor at the time ignored the symptoms my husband was complaining of, which was frequent sore throat and ear pain. The doctor didn't even make a referral to an ENT specialist - he just sent my husband home with some "Cipro" for his ear and some cough medicine with codeine in it. After I switched HMO's to the one I am currently with - our new doctor noticed something "suspicious" (hard mass on right side of neck) and sent him to an ENT doc. A biopsy was done and sure enough it was squamous cell carcinoma at the base of the tongue. Even the dentist my husband was seeing did not think to check for anything. It's amazing how quickly doctors ignore or dismiss a patient's concerns without being cautious enough to have further tests done to rule out a diagnosis or to confirm it. Usually by the time it's been "confirmed" - the patient has had it spread to lymph nodes and it's much harder to treat. People in general need to be made more aware of oral cancers and doctors need to be more vigilant.

I also have to agree, I was misdiagnosed by my recent family physician for about a year. Kept going and telling him something just was not right and he kept saying it was sinus and allergy problems. Finally insisted that something different be done. Not once was there a throat culture, look down the throat. Went to ENT who suspected right away when he heard me talking. After verything was said and done I was diagnosed with laryngeal cancer in its 1st stage.

Mike D.

Diagnosed 06/2002 w/Laryngeal cancer, 1st stage

From reading these posts, one can relate that physicians or dentists sometimes can miss an oral lesion entirely. Not to be biased but you should have or request your dentist to do a complete oral examination on you. Family physicians are not very familiar with oral lesions because they are not trained in indentifying them in the oral cavity. Don't be afraid to questions if you feel that the answer does not make sense. Seek second opinion or even a third. I have heard some many familiar stories of antibiotics rounds after rounds before cancer is diagnosed. If a doc cannot give you a definitive diagnosis of a lesion, time to get the answer from someone else. DP

I saw an oral surgeon, a hygienist and dentist (twice) and a GP (twice) with 2 rounds of antibiotics (with a highly visible tumor, tan rubbery blob, slightly larger than a golf ball AND THEY COULDN'T DIAGNOSE IT! It took the ENT about 5 microseconds to tell me to get my "affairs in order" - and that without even taking a biopsy. And I did bring it to their attention numerous times. They now perform (and they did perform regular cancer exams but mainly under the tongue, in the mouth, gums and places like that. They never wrapped gauze around my tongue and took a look in the back of my throat but then maybe that is outside their area of expertise. It was a big honking tumor though and readliy visible as I already mentioned.

In all fairness to my dentist, he has a practice in an upscale area and has seen about 3 or so oral cancer patients during his entire career (almost 40 years and he is semi-retired). I'm not ripping dentists here but there's nothing like going to a specialist for a complicated area like the head and neck.

In my case, a lump was noted on my neck during a pre-op exam for a colonoscopy. Since I was in the middle of a crown, I was sent to my dentist. My dentist said it might be due to an old root canal, so he sent me to get the root canal redone. After the root canal redo and 10 days of antibiotics, the lump was still there, so my GP sent me to get a sonogram. The sonogram didn't seem to help much, so my GP sent me to a H&N surgeon who did a needle biopsy. This ID'd cancer which led to a PET/CT, etc. The entire identification process itself took over 2 months.

If someone along the line had said, "don't worry about it, I don't think it's cancer" I more than likely would have breathed a sigh of relief and glady put it aside. Of course, knowing what I know NOW, I would never do that - but this wisdom comes only after a tough experience.

I had multiple visits (over an extended period of time) with my dentist, my GP and finally an oral pathologist at a major dental school, all of whom told me the very visible, growing, and painful lump on my tongue was nothing serious and I didn't need to worry about it. They assured me I didn't fit the risk profile for oral cancer, and the pathologist said the fact that the lump was painful was almost certainly proof that it wasn't cancer! However, when I finally insisted on seeing an oral surgeon, he was the one who recognized the immediate need to get a biopsy, and he then put me in touch with a medical oncologist who has been in charge of my care ever since. (This was way back in the days before the internet, and information on OC was really scarce.)

I guess this illustrates that sometimes you can get a series of wrong opinions, and if collectively they don't make sense, you have to keep pushing for reasonable answers.

Cathy

All dental professionals are taught to indentify oral lesions. Anyone from general dentists to oal pathologist or orthodontists. We all have taken oral pathology classes. I am very saddened that some of your providers failed to diagnose in a timely manner. Oral exam is easy to do, even you can do this at home. Look on both sides of your toungue. Check for any areas of whitish patch. Look at the bottom of the toungue as well as floor of the mouth for similiar lesions. Look on both sides of the cheek. Say Ah and look at your tonsils and your throat. If in doubt, go to a dentist for a biopsy. Every single lesion in the mouth must have a diagnosis whether it is an ulcer due to trauma (say from a rough edge of a tooth) or a harmless blocked minor salivary gland. As I mentioned before, it a diagnosis cannot be rendered, see someone else who can. DP

(03/18/2007)
[Your Health]
The Most Dangerous Medical Mistake

As many as 90,000 Americans die each year from medical errors, but the kinds we most fear

Petey - Please send news stories to Sheldon, where they will get put up on the main site. Also your posts are full of returns in them. You don't have to do that, just keep typing when you get to the edge of the block, and the postings will wrap and automatically become dynamic and be as wide as the window someone has open or as small automatically. When you put returns in, it defeats this feature of the posting boards.

OK on the returns. Who is Sheldon? And how do I contact him, or send articles to? Thanks, Petey

Petey,

This is Sheldon's email address [email protected]

Drop him an email and ask him the best format to use.

Jerry

The stats sadden me, the misadventures are difficult to fathom, I am trying through education and continued training not to add to these misadventures.
I agree with Dai, we were all taught and it is simple. We should all be doing our own exams and if you don't like something you feel or see get it evaluated. If your not happy with what you are told get a second and even third opinion.

I had to see four surgeons before I convinced one to biopsy my "cyst". My "cyst" turned out to be "clear cell sarcoma" malignant and very invasive.

We are our own best advocates.

Look after yourself,
Mike

What can I do about a local ENT who continually misdiagnoses/misses obvious H&N/ Oral cancer? This is not just an anomaly. Our Wellness Community group for HNC meets once a month, and every month there is a new story about this guy, how he misdiagnosed cancer, calling it GERD or something and prescribing the purple pill?

A friend of mine died a few years back after being misdiagnosed by this guy. He had tonsil cancer and the ENT told him he had acid reflux. My friend got sicker and sicker and finally went to a legitimate ENT who actually looked down his throat , biopsied and gave him the news.

This local quack is killing people. How can we stop him?

Those of you familiar with Robins story ,or who have read my blog are well aware that Robin was seen 4 times over 6 months by a dentist who totally failed to recognise a tumour on his tongue that went from the surface to the full depth.Robin only went to the Doctor when he developed an egg sized lump in his neck,but because it was on the opposite side to the six month old unhealed ulcer on his tongue,and the dentist had said it was nothing to worry about,he never mentioned it to his GP.As a result his diagnosis was delayed by yet another fortnight while the GP treated him with antibiotics for a possible salivary gland stone.Once we were refferred to the ENT department things moved very rapidly for the simple reason that i went with him and immediately told the ENT registrar about the ulcer and one look at that plus the lump in his neck told him everything he needed to know. He told us straight away that there was a very strong possibility that he had cancer.
The rest as they say is history, but the minute we got home from the first appointment with the hospital,i went straight round to the dentist ,and told him exactly what i thought of his skills or rather his lack of them.
I reported this man to the governing body for all dentists in the UK,and he has to face a disciplinary board on September 11th. The case is being taken on by the fitness to practice department and if he is found guilty of negligence he could be struck off.
So Riley in answer to your question,find out who regulates the ENT doctor and report him.Simple as.!!!

Hmmmmmmmmmmmmmmm--just a different perspective.

In January, I suddenly had a numb area on my lip--googled it and came to what were--unfortunately--the right conclusions.

Went to doc--his response was 'uh, don't know, see a dentist, if it hurts go to A&E (ER)

Went to dentist--young Spaniard, only reasonable English--full exam, X-Ray of jaw, diagnosed exposed nerve from jaw-thinning, immediate referral to Maxioll-facial surgeon.

The NHS being what it is, the process then took months, during which time I revisited dentist twice as jaw tumour grew and became more painful--he prescribed antibiotics and painkillers twice in case it was an abcess and offered each time to ring hospital for more 'emergency' consult--he obviously was aware of what was happening--it was ME who refused as I was determined to visit my daughter in california 'if only one last time'

I LOVE that dentist!

Brenda

want this to go well i am sending by fax a deatiled letter to jim webb tomoeeow on all my missed stuff. i spoke to a member of his staff today and reminded them that medicare is paying dearly for these mistakes. there is growing cancern about this paying for mistakes.mr webb is my us senitor

It took me about a year of doctors visitis before i was eventualy diagnosed. Started in the summer of 2005 with an enlarged lymph gland & my g.p. told me not to worry as i'd had a virus fairly recently. He said "this happens sometimes. It probably wont go away". By the Christmas i had a blocked ear and by the January i started with serious nose bleeds. Was told by my G.P it was probably just a synus infection and given anti-biotics. Not concerned at all, i put it off a couple of months, but went back when my left nostril was blocked - i thought from persistantly blowing it to get rid of the thick discharge i had constantly. Again MORE anti-biotics and nasal spray. Went back again in the June of 2006 when i had constant nose bleeds/discharge/head aches. I again pointed out my Lymph gland which was the size of an egg - and uncomfortable. & my doctor ordered blood tests. Which resulted in an ENT appointment & i was diagnosed that week.
Phew!

My G.P knew they'd made a mistake by not reffering me sooner. But i didn't take it any firther, because cancer of any form in a 22year fit healthy non-smoking woman is so rare. & they're not gods.
At least now they'll be more vigilant and it wont happen to someone else!

They may not be gods Chelle but they are highly paid well trained professionals and as such we trust them with our lives.They dont pay for their mistakes or oversights with their lives,young formerly healthy people like Robin do.So if they get it very wrong they should be held accountable .Just like every one else.

I am bumping this thread up again because we now have several health care professionals on the forum ,who may like to comment on why there is so little improvement in early detection between the dates of this thread.
Joannas first post was in 2003 my last post was in 2007 .What has changed,and why are dentisits still getting it wrong?

One comment - I don't think it's just dentists that are getting it wrong. My first visit was to my physicians office, and even though I was very worried about the ulcer on my tongue they did bloodwork and gave me diflucan (I had recently had a bowel resection and as a result of all the antibiotics, a yeast infection in my mouth that had previously been treated with the same) .... and said wait and see how it looks in a few weeks. I had a very bad feeling about it, though, and called back within 2 weeks to ask about the best ENT to see - had a hard time getting an appt with one (Most could not see me for at least a month) and finally got in to see one who again did some more lab work and gave me steroids and said let's wait and see the test results and how the steroids work... Finally he agreed it was time to do a biopsy...

2 21 05
on exam,i can no longer find the original lesion and i see nothing in his mouth that looks abnormal. i feel no significant nodes or other lesions in his mouth that looks abnormal.
john muller md
4 5 05
diagnosis :squamous cell carcinoma, moderately well differentiated.
pathologist james burnes md

Liz, Paulie, et al,

I feel your anger and frustration and I share it with you. I have been posting on this forum for almost 2 1/2 years and every time I read about a missed chance to catch this disease early, I shudder and cringe. I know it's not only the dentists and the hygienists that are missing the diagnoses, it's the general physicians and the ENT's, as well. But, it doesn't matter who misses it, the end result is the same, someone will suffer because of their missing the cancer.

I don't know why this keeps happening. I think part of it is a lack of education. Before I had my scc, we did oral cancer screenings in our office, but I have to admit, they were not nearly as comprehensive as they are now. I'm also sure that we wouldn't have been as motivated to buy a VELscope.

By using my experience and knowledge I hope that I can make a difference. I'm sure that Mike and others like him that have not had oral cancer themselves, but are devoted to promoting early detection, can surely make a difference.

It's a difficult task, but one that we are not about to give up on. It seems that almost every day, I get involved in another way to get my points across, but there is a limit to how many people that I can reach.

I know that my story that I had published in my state dental journal reached over 6,000 dentists in PA and I hope that some, no many of them, have added better screening techniques for their patients as a result of reading my story.

I am trying to push the American Dental Assoc. to use the video interview I did with them almost 2 years ago in some sort of campaign to promote early detection. The word is, possibly in 2008.

In another post in this forum I have mentioned the news piece that hopefully will be done in 2 weeks and will be shown on the local ABC affiliate in Philadelphia. This coming spring I will be doing oral cancer screenings at a regional dental convention.

I'm hoping that with all this and more to come I'm sure, that someday I, we (Mike and others) can make a difference.

Jerry

Jerry,
"We", will make a difference!

I have e-mailed you article to all my local colleagues and attached a link to the VELScope site.

Warmest Regards,

Mike

Jerry i wish we could have had you or Mike as our dentist a year ago!!
Rob may have stood a chance,but who knows.What i hate at the moment is with the dentist he had he had NO chance.

keep up the excellent work.

love liz

Cookey,

Jerry and I just try to do our best for everyone, everyday. If you are ever in our neck of the wood either of us would be proud to be taking part in your care as your dentist.

Thanks for the kind words Cookey,

Take care of you,

Mike

I am so glad that there are professionals like Jerry and Mike who are working to educate their own peers. I also think that all of us can play a part in that, and I know a lot of us do. I actually started going to a new dentist - well, not so new, I went to her about 10 years ago but then insurance changed, etc... but I started back with her a few months ago as I really liked her before. I found that although she does do oral cancer checks on her patients, she is not as up to date on everything as I had hoped - but is very interested in hearing all about my cancer and everything I have learned about oral cancer (mostly from this wonderful web site) Although I am an RN by education, I work in information technology now so it's interesting to see how often I actually know more than my own physicians.... so I try to educate as much as possible!

Me2,

Thanks! I'm, we're, (Myself and Jerry) just doing what we love. Now, I'm learning from people who will help me help my patients. Keep educating it helps all who know you as well as yourself.

Cheers,

Mike

Ginny,

Give this link to your dentist. I'm sure she will appreciate it: www.velscope.com

Tell her that I for one, have learned so much from the OCF site, that I feel that I am a better health care professional for it. If you haven't already done so, tell her to check out the OCF.

If she has any questions about the VELscope's usefulness, she can get in touch with either Mike or me. We both use it.

Thank you for your kind words and the things that I'm sure you're doing to spread the word. Anyone that has been through what we have, is someone that people will listen to. I know in Petey's short time, he made a big contribution making Oral Cancer awareness prominent in Lake Worth, FL. And Sharlee's booth at the fair I'm sure stopped many kids from using spit tobacco.

Jerry

I don't if these stories are still being read but here is mine. Just before Labor Day 2006 I went to see my G-P because of a sore throat. It was to the point I would need to take 2 Tylenol after eating dinner. The G-P sent in an intern who thought it sounded like streph to her. She took a long Q-tip and swabbed the back of my throat and touched my left tonsil. When she did that I nearly shot out of that chair. Nothing was said about it. So the results come back negative and it is said I have a sinus infection and gave me some Nasanex (steriod). Well we went to Philadelphia over the holiday weekend and flying back to Atlanta I could not get my ears to pop. Finally the stewardess told me to plug my nose and keep my mouth closed and blow out. This worked. A couple of days later the TMJ on my left side got to hurting so bad I could barley open my mouth. I just thought it was a side effect of the steriods and quit using it. Well I waited about 3 weeks for the steriods to clear my system and I needed some relief. I finally got in to see an ENT on 10-16-06 and he reconized it as soon as I sat down and openned my mouth. Well the rest is history and I now have a new G-P. I tell everybody and anybody if does not go away get it checked. I am now felling about 80% of where I was prior to getting sick and am positive I will make 100%.