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