I had a dentist for a year that looked at my spot in my mouth and kept telling me it wasn't oral cancer. But didn't refer me to an oral surgeon or take steps to do a biopsy. So finally I switched dentists. The new one didn't think it was tongue cancer but referred me to an oral surgeon for a biospy just to be sure.

Well it was tongue cancer. I had surgery and radiation. I am very lucky-it is stage 1 with no lymph node involvement and it did not spread anywhere. I will be ok.

So should I do anything about the firt dentist who ignored my concers or just let it go? Is it worth it? I just hope he doesn't do it to other people as well. Has anyone been in this situation?

I've been in this situation-- had a couple of visits to the dentist who saw the spot and never told me to get it biopsied. I was stage II when it finally got biopsed--also pretty lucky but because of some aggressive features of the tumor I also had aggressive treatmnt which have left me with some quality of life issues (can't swallow).

With all the other stuff I was dealing with (I was diagnosed with breast cancer--unrelated--at almost the same time I was diagnosed with tongue cancer, and once that was treated there has been the swallowing battle, not over yet) I have not had the energy to think about legal action against the first dentist but I would have a very differnt life, possibly for the rest of my life, if he had caught this earlier.

Is there a time limit on legal action pover something like this? I assume there is and wonder if I'm beyond it already.....

Sorry, not much good advice to give you just to say you aren't alone and I know how you feel (really hope this dentist pays more attention in the future).....

Nelie

Thanks Nelie.

I am just toying with the idea. I don't know if I ever would do anything about it just because of the energy it would take and as we all know, life is too short.

It does help to know I wasn't the only one who has been in this situation.

I can't comment on legal action - but I would like to comment on a possible pro-active step you could take. Have you considered contacting this first dentist to let him know that he did misdiagnose you and perhaps forward him some information that might help him prevent making the same mistake again.

Legal action might get you some sort of revenge or a sense of justice, but a pro-active approach might also save someone else's life.

Just a thought.

My dentist who failed to tell me I needed a biopsy (until the third time he saw the cancer when it had gotten much larger) does know he missed saying something earlier. My husband let him know. The thing is, he's a very likable guy and that does make a difference to me (even though it probably shouldn't).

Someone told me about some research that had been done on the body language of doctors with their patients. They could predict from the body language which docs would get sued most often. Not because body language predicts screwing up--but body language predicts how much the patients personally like their docs and when patients like a doc they don't end up suing as much even when something goes wrong.

Sorry. Kind of off-topic but as an experimental psychologist I found that pretty interesting....

Nelie

I agree with all of the above posters - I was mentioning this "thing" in my throat for a year and he never once suggested seeing a specialist. It got to be 6cm. It practically could jump right out of my throat and was readily visible. He is a great dentist and old friend. I asked him how many patients he has seen with oral cancer in his entire practice and he said "about three" (and his practice is huge). I also went to my family doctor several times and he didn't get it either. I have been seeing this dentist for over 30 years. The hygenists routinely do a cancer screening and they missed it. They might have missed it anyway until it got really large - the tonsil hides behind the side of the tongue and nowhere near the area of concern of the average dentist or hygenist.

This is one of lifes little speed bumps - after all he didn't give me the cancer. They have certainly become more careful in their screening since then however. Maybe a life will be saved.

In the scheme of things oral cancer is fairly rare compared to other types. A few here have even had problems finding an ENT to Dx it correctly.

Even when my tumor was very visible (and painful), I was told several times over a period of 2-3 years by a GP, a dentist, and finally an oral pathologist that it couldn't possibly be anything serious. (The pathologist wasn't actually looking at any test results -- he was going on the basis of my non-smoking, social drinking history.) I know my oral surgeon (who did the biopsy that diagnosed the cancer) contacted the other doctors to tell them what they had missed.

My husband is an attorney and on a few occasions after my treatment ended he mentioned that he had considered suing at least one of them, but in light my good recovery, he abandoned the idea.

Cathy

Hi Banker,

I was happy to read that your cancer was a Stage I with no lypmh node involvement. I was wondering what type of treatment you had. Was it surgery only?

The topic of a missed diagnosis is one that is very important to me as a dentist, oral cancer survivor and a member of the OCF. There hasn't been a week that has gone by since I joined the OCF that someone here doesn't say that their cancer was missed by their dentist, hygienist, oral surgeon, etc.. I find this to be very disturbing, to say the least. In all fairness, there are many members whose dental professional did find their cancer. But, as far as I'm concerned, one missed diagnosis, is too many. And Cathy, to blow off a lesion because the patient doesn't smoke or drink, means that someone is uneducated.

In my case, I did not suspect that I had squamous cell carcinoma nor did the oral surgeon in my office that performed the biopsy. But, because the sore wasn't healing, we did what we knew should be done. To say the least, I was shocked.

As many of you know from my previous posts, an article that I have written and activities such as oral cancer screenings at the Relay for Life and participating in the NYC Walk for Oral Cancer, I am trying to make a difference. I feel very strongly about the fact that something has to be done to better educate the dental profession and the public so that the words "Oral Cancer" are as noticable as Breast Cancer, Lung Cancer, etc.. I want patients to ask their dentist why they are not getting screened for oral cancer and to switch dentists if nothing is done about it.

Now getting to the topic of suing. It would probably be a very hard case to win. Considering the time and money you would have to put into a case, it would hardly seem practical. I not saying this to "protect" the dentist(s), but because I honestly believe that it would be hard to prove negligence. But, I'm not a lawyer.

On the constructive side, have you told the dentists involved that they missed your cancer? It would be a service to them and their patients, if you could make them aware of what happened and suggest that they look into continuing education courses and ask them to check out websites like:
www.sextetscreening.org
and www.gotdds.com
for training on how to do a thorough oral cancer screening. The American Dental Assoc. offers a continuing ed course on oral screenings.

If you would like a copy of the aricle that I wrote for a local dental journal to give to the dentist(s), send me an email and I'll attach it as a word document.

Jerry

PS Gary, I know how down you are on dentists in general about their lack of screenings from many of your previous posts and I was happy to read above that you appear to still be friends with your dentist. Also, Gary, you make a good point that many lesions are very difficult to see and I may add, many times require a scope to be vizualized.

Sorry, that second link is www.gotodds.com

Jerry

I am shocked as I read the amount of time it took many people to find out about their oc. My son said his lump (under his tongue) had been there about a year - well, maybe two. I was floored. "Why did you wait so long to bring it up?" He had been to his dentist every 6 mo. (not noticed) but alas, he never said anything either. He finally went to ENT because of swollen node on neck who cut it out from under the tongue that day. (small gray thing) I think people know when something isn't "right" with their body and should point it out and/or seek further evaluation. I am so against suing anybody for the problem. I think Gary said it best when he said to inform the dentist; he has to feel horrible about it.

Unfortunately in our society, when something bad happens, we want someone to pay. Maybe one person could get a great verdict, but believe me eventally everyone in the country would pay. Dentists, hygienists, dental assistants are just human and obviously not as well educated on this subject as they should be. Getting the word out is the best thing. I know I'm going to mention it to everyone.

Well maybe the answer is an annual visit to an ENT, just like women get annual pap smears. Early detection should be done by experts. There needs to be an entire screening protocol developed for early detection, complete with appropriate reimburement from the insurance companies. Maybe something similar to a PSA test for the saliva to indicate a more substantial screening. This is a stealthy cancer for most of us.

For the longest time I felt that there was some false sense of hope that my dentist was giving me about the tumor, but I don't honestly think that that he would blue sky me - it was simple inexperience on his part. He's a dentist for God's sake - not an ENT or Head & Neck surgeon.
Even my doctor didn't know what it was. I might as well have asked my mechanic. It took the ENT about 3 microseconds to Dx it - and that didn't even include the biopsy.

Like Brian, I would like to see better training for those frequently in your mouth but face it - the tonsils aren't visible and neither is the base of the tongue. It takes specialized equipment and medical training. The visible cancers, i.e., under the tongue, etc. seem to be in the vast minority here, with the exception of the tobacco chewers.

And yes my dentist DID feel horrible about it - he gave me the dental trays and an extra free cleaning a year for a while. He's a great dentist. I dragged my feet going to the ENT also so I take full responsibility for my role in this.

Jerry, I'm not really down on dentists - It was actually a dentist at an AA meeting who told me that I really needed to get to an ENT because my symptoms and lack of pain were very troubling.

It just took me a few years to process it.

Since life is a terminal illness anyway maybe we should just sue God.

Gary,

As far as God's lawyer is concerned, as the joke goes...there are no lawyers in heaven. I'm allowed to say this because both of my children are attorneys.

You are right about tonsils and base of tongue cancers. Personally, I intend to have a yearly laryngoscope, because BOT tumors going undetected, scare me. My tonsils were removed as a child, so there is no concern there. All other areas are screened in my office every 3 months. (as well as my personal screenings).

It's a shame that you waited so long, but that is human nature. Relatively speaking, I did the same thing. Waited. I knew I had a lesion, waited for about a month or two, showed it to the surgeon and then postponed the biopsy a few more weeks. This of course is a minimal amount of time, but still, I dragged my feet, when I just had to go into the operatory next to mine. HUMAN NATURE.

Collie, your outlook about law suits and education are right on the mark. And by the way, welcome to the OCF and I hope that your son is doing well. I hope the issue of your son's node is resolved soon. It's good that he is back to work. He should be able to know his limitations.

Jerry

It doesn't all have to do with how visible the tumor is, though. Mine (and Cathy G's too) was right there on the edge of my tongue--quite visible--and the dentist and hygenist even commented on it on a visit before it had grown large enough for them to get more concerned but didn't ask me how long it had been there or tell me to get a biopsy. And my GP also, even when it was quite large, didn't think it could be cancer. Later he said apologized--he'd just never seen a tongue cancer before (and I'd say he's in his 40s). There definitely needs to be better training on this.

As for poeple "knowing" when something "isn't right with their body", I wish this were true. Unfortunately many cancers are so stealthy people have no idea until they are well advanced because they feel absolutely fine. In other cases, such as mine and I think Cathy's, we did have pain and may have wondered if something wasn't right but when it is dismissed by doctors who you would expect would know if there were a problem, it's easy to dismiss it yourself!

Nelie

Jerry to answer your question- I had surgery and radiation. Me and my ENT agreed on radiation to be aggressive due to my age (34) and I didn't smoke or drink much. Plus my mom had tongue cancer about the same age as me about 20 years ago but hers was more aggressive and spread even after they thought they removed it from her tongue. I think if I didn't have radiation the chances of a recurrence would have been greater due to my history.

In my case, the tumor was very visible. I guess what really bugs me about my dentist and other doctors who "think" it wasn't cancer IS...if we already had insurance and already concerned about the spot- what does it cost THEM to do the referral for a biopsy to confirm either way. In my case, he did nothing when either he could have done the biopsy (and would have been paid accordingly) or done the referral. What would it cost them just to do it (referral or biopsy)...nothing. So why didn't they just do it??

But I agree, eduation and training of these doctors for cancer screening should be improved. In fact, in my case it was the dental hygenists that were much, much more concerned than my dentist ever was and said I should go get it biopsied.

Jerry - thanks for the welcome mat. I have learned so much from this site I finally decided to join in. Son stopped by this morning; he looked very good. He is a nurse and worked all night. He ended rad 6/5 and last weekend started eating solids. Boy is he happy. His node is still there, but it is smaller than it was. He is so happy to get out of the house and has received so much love and compassion from his patients and coworkers and doctors - I think it is real good for him to get back to work.

As for the delay in diagnosing: People are soooo right. What in the world do you look for? How should you feel? :rolleyes: If we ran to doc for every cold sore, ache or pain it would be a travesty. I think the best advice I can think of is if "it" doesn't heal within 2 weeks, get concerned. Start asking Qs and shoot, self-refer to an ENT or - gasp! Pay for it yourself. But our Human Nature says: Ignore it; it'll go away. Can't blame people, it's scary. We've all done it.

I am checking this site very often. Many thanks to all that share their experiences and opinions. Collie

my case was very similar to nelie's and cathy g's. had a lesion on left lateral border of tongue for a while that wasn't even discolored and only hurt when i ate spicy foods. for a while a thought it was caused from my teeth rubbing against my tongue. i asked doctor friends and no-one had an answer. saw my gp and he said its prob nothing. one day around 6-8 months into this my roomate comes home having seen a billboard with a woman sticking her tongue out and a message "don't let this grow up to be oral cancer". that was the first time the C word entered my mind. immediately went to dentist then oral pathologist for diagnosis of SCC. thought about suing my dr who said its prob nothing but didn't bother. luckily it hadn't spread to nodes. i have my last radiation reatment tommorrow for my recent recurrance and when i recover i plan to get much more involved in education and early prevention causes.

At a regular dental cleaning and filling appt., the hygienist pointed out to the dentist a red spot way back in my mouth. He said it was nothing and being complely uninformed, I forgot about it until six months later when I happened to read a short article about oral cancer and inspected my mouth with a flashlight, and found a BIG tumor. I was initially very angry with the dentist, for all the reasons so well stated by banker -- there was plenty of insurance so it would not have cost him anything to investigate. However, about the time I finished treatment and had decided to just go have a talk with him and suggest some education, he was stricken with a debilitating disease and had to sell his practice. Friends going to the replacement dentist say he ALWAYS checks for oral cancer, so I guess things worked out well. Yes there was negligence on the part of the dentist, but I was also to blame for a little smoking and more drinking over many years. In a perfect world it would have been discovered at Stage I, but I was fortunate enough to have care by people who were experienced at dealing with Stage 4, so it all worked out. I have no complaints.

Hi all,

I want to respond to the comments about dentists being reimbursed for doing cancer screenings. I don't think that this really is an issue and the reason why it isn't done in so many cases. The reason, in my opinion, is LACK OF EDUCATION".

If a dentist or hygienist is doing a thorough examination, he/she should be including an oral cancer screening as part of that comprehensive exam. There need not be a separate fee for it. The fees for most of the procedures we do are based upon the time we spend doing it. So if one knows how do to a screening, you do it and then charge accordingly for your time.

Procedures such as brush biopsies or scalpel biopsies are submitted for payment to insurance companies for patient reimbursement.

Again, I really don't think geting paid is the problem. I think it is very admirable that so many members here have approached the dentists, ENT's, etc that have blown them off and tried to get them to change their practices based upon their missed diagnosis. I know that I would find that a very difficult thing to do had I been in that position. Anger is a hard thing to overcome.

An interesting story came to my attention just 2 days ago when I received an email from a retired colleague of mine who moved to a new area and started seeing a dentist in that location. The main thing that struck him was the lack of oral cancer screenigs in that office. He has been working with the hygienists in the practice to get them to do screenings and when he read my article, he wrote to ask if it was OK to share it with them and the dentist. Of course I agreed as that was the purpose of putting it in the journal to begin with.

As an aside, you have to realize that it is a possibility that a dentist can practice his/her entire career and never see an oral cancer. I've been looking for over 35 years and mine was only the third one that I've seen!

Jerry

Actually some insurance companies (my Cigna dental does) do pay for the exam. My dentist bills separately for an oral cancer screening and they pay him $35. Don't remember number if times a year they will pay for it.

Take care,
Eileen