Hello all

I am new to the forum. By way of introduction, I am not currently an oral cancer patient nor a survivor; I am in the "curious, frightened and frustrated" category...

I know no one here can diagnose me, and I think I'm doing a decent job of trying to get some answers from professionals, but I am hoping to solicit some input from you.

A brief overview/history -- I am 45, female, a recent ex-smoker (a whopping 4 months so it doesn't count, really), never a drinker of note and not a particularly heavy smoker but I smoked for 21 years so I think the heaviness factor is moot. I am HPV negative. I have no history of cancer in my family, but I understand oral cancer doesn't have much of a genetic precursor.

I also have a history of really bad teeth. Owing to some family trauma in those early years in which you sprout those new adult chiclet looking teeth, I didn't see a dentist til I was an adolescent. I'm not sure that's to blame for the years upon years of fillings and infections and root canals but I always feel it important to put the disclaimer out there (to perfect strangers, no less) that while I've been a dumba** about smoking, I always brushed and flossed and had regular checkups.

Ok, enough blah blah blah. I recently completed two root canals; one left me with some intermittent parasthesia and a nasty abrasion on my gum. I had the Oral CDX brush test (at my insistence) and it came back potentially dysplastic. DDS sent me to an oral surgeon who pronounced the brush path report unremarkable and didn't see any spot to biopsy (to be fair, like the squeaking noise your car makes only when it's nowhere near the mechanic, the abrasion was gone by the time I saw him). The parasthesia has subsided somewhat but I have two slightly mobile teeth near the abrasion. DDS and oral surgeon both attribute it to grinding my teeth and high spots owing to two crowns (and malocclusion owing to a couple of newly yanked molars). Prior to this, I've never been a grinder...

Fast forward 6 weeks and I have a lump next to a molar (in between tooth and cheek). Near as I can tell, it's pink and not roughed up and it's very squishy and moveable. This molar is behind the molar which was recently pulled (significant infection, failed root canal, apico not an option). The lump has neither increased nor decreased in size in the past few days.

I am experiencing intermittent pain but not ouchy abscessed tooth pain, more of a fullness, a feeling of heat and an occasional feeling of stuffiness in my ear (though it's intermittent). I have been feeling some burning sensations on my tongue but they come and go. I saw the DDS today, he felt the lump and said it's evidence of some infection. X-rays showed nothing, or at least nothing that he saw, but he claims infection can be "hiding." The tooth is mobile (which I didn't know) - he found this bothersome but said it could be the infection... or some loss of bone structure supporting the tooth.

I saw my gyn yesterday (unrelated) and she checked my neck and said I have no swollen nodes. I have no facial swelling and no other symptoms. I'm not overly tired (I work full time and have two young kids, so tired is tired) and I feel fine otherwise. But I have to admit, I'm getting a touch freaked out. I can't really justify complaining about being sick of dental work in light of the amazing, heroic and incredible battles you all are facing and have faced... so excuse me if I sound whiny. I'm not sure at this point if I'm losing my resilience (ok, it's wimpy but I've been "abused" in dental chairs fairly regularly since I was 14 and my dental visits never produce a shred of happy news) or if something's honestly wrong.

I don't know why I'm hyper aware of oral cancer - could be my history of smoking, could be the publicity (here in Chicago) about Grant Achatz, could be what I've learned reading here -- and one things that seems to be a constant is that this consistently gets misdiagnosed... and missed altogether (if you have read Grant Achatz' story, his string of dental and GP misses will break your heart).

I asked my DDS point blank today if I should call an ENT and he insists (though meekly) that he wants me to see an endo. This confuses me, as I have no evidence (nor does he, from the xrays) that the tooth is dying... He put me on clindamycin and who knows, maybe all I have is an abscess that no one can see. I hate to be a hypochondriac or someone who just is simply taking her ball and bat and going home because she's a big fat baby about additional dental work.

Just unsure, I guess, of what I ought to do next. Perhaps a therapist and soft restraints...

OK, so one whopping risk factor of note, tobacco, which for several decades of use (your term light is relative) is a good one. Very knowledgeable, and capable of describing to your doctors what is actually going on (can tell from your description here). Also importantly aware that many of us, me included, have been through reams of misdiagnosis before the bad news finally came, delaying everything that follows and making the chances of beating things worse.

1. I like the endo idea. He is going to drill a hole right down through the center of that mobile tooth and into the pulp chamber, which you haven't described in detail. Teeth with an abscess OFTEN but not always are sensitive to percussion you don't say about those in the area. When he does that, if putrid pus emerges, he is going to have an immediate answer. Infection, to the point of screwing up the tooth which is now spilling over into the surrounding tissue, and if left untreated for long enough, causing bone loss/mobility, and finally a decent size, palpable (but usually tender) mass of significant size. Smooth and mobile as a rule so that fits. Infections often produce a warm feeling, and they, if left untreated, refer symptoms to surrounding area, such as your ear. Given all the dental work of varying quality you could have a TMJ issue, but that is likely remote. While you say that you have brushed and flossed for years, your many years of endo and restorative work indicate that all is not perfect in your oral world regardless of your description. This is assuming that your dental treatment professionals didn't just wish to use you for practice. If your dental heath is compromised, there are lots of good things besides cancer to pick from, and while a continuous pain in the rear, way better to deal with than having the big C.

2. There is no reason that you cannot pursue two courses of exploration at the same time. Dental x rays are crude by head and neck standards. I would not base my freedom from something bad based on them, and tube head angulation when they are taken can mask an abscess or worse. I would begin an additional line of inquiry. That mass can be punctured and the contents in it biopsied. Seems kinda like a simple thing to do, and not expensive. It would give you another data point. The Oral CDx brush test is a pathetic brush cytology system for superficial class two lesions, and yours is not a good indication for its use. So a consultation with someone that is not in your current group of practitioners that is in the world of oral cancer is in order. This I would do as soon as practical given all the opportunities for this to be many things.

By the by I have had a therapist or two, the first one after being someone who didn't deal with my actions and experiences in a country very far away, where horrible things happen to very good people, or just harmless bystanders daily- and the another instance on the couch being less adapted than most of the people here to dealing with my cancer diagnosis and treatment.... Let's see, that doesn't count the one that I went to after my first divorce, and another one when I found that I had a preclusion (and ability) to wish to terminate the existence of the doctors that misdiagnosed me for so long. If you go to one, don't get the soft restraints, I have found they are too easy to chew through....even though some days it really isn't worth the trouble. Besides, I find it particularly hard to believe that someone that hasn't killed anyone, or had his friends die in his arms as their warm blood drips on you, or really fought for his life (the 405 freeway in rush hour traffic in your Mercedes does not count), in a battle where the odds were against them, could have a clue as to what is screwed up in my head. Therapy does allow you to vent- (a good thing) - but didactic knowledge vs. life experiences is not sufficient in my mind, to give them the ability to straighten out someone as screwed up as I have been. Beneficial to some during some stages of life, be many times completely devoid of usable answers.... as in the typical " well what do you think is behind this feeling of yours Brian?"

By the by, Grant in Chicago had plenty of misdiagnosis, but for all the press he has gotten, the story has been told here many more, actually innumerable times, with far worse outcomes. Be thankful you are not black and poor because this would significantly reduce your chances of finding out what's what. So there is an upside. You're educated and on a path to discovery. Keep us posted as the results from your exploration reveal themselves. I hope that one of the real doctors here from dental will post his observations. Please also excuse my writing style tonight, I am not in my best form, and I do not wish it to come across as flippant (having now re-read it) or dismissive in ay way of the seriously anxious situation that you find yourself in.

Brian

First off, thanks much - very much - for your reply. I've read a number of your posts, and read a good deal about you and this foundation and I have developed nothing but the utmost respect for you and your work.

No need to apologize for any real or implied snarkiness. I have, by comparison to you or anyone in this forum, lived a life of reasonable ease -- but I am aware that life has plenty of sharp edges and rough spots. I am fully capable, somehow, of being a big fat baby while not being a hothouse flower.

If I glean anything from your reply, it is that exploring both "side" of this issue is not unreasonable. It seems as if tobacco use has out me squarely in a primo risk category while my dental issues (and yeah, they're legion) have a life of their own as well.

And you're right - there is a vast difference between taking good care of one's teeth and having good teeth well-cared for... my teeth are a mess, have been for many a year and it'll likely not end soon. There is every realistic reason to suspect this is yet another example of an infection, the likes of which I've seen before. In fairness (and maybe one of the dentists here will weigh in) too, my DDS has "warned" me, since this last round of extractions (loss of 2 more molars, upper and lower) that shifting teeth and improperly fitted bite surfaces will offer a whole host of new problems. I am wary of that answer - but I'm wary of alot of what dentists say of late.

I posed my chronic inflammation/chronic excavation dental theory of possible cancer to two of my sibs, one of whom is the recently retired chief of nurse anaesthesia at a major teaching hospital and one who has been an onco RN/BSN onco instructor for 17+ years... they listened (fairly raptly, for typically dismissive older sisters) as I explained that I believe that repeated dental issues, infections, constant years of work and abrading, moving tissue, etc. could easily cause cellular changes, enough to cause some mutation...enough to cause ... cancer? They smiled and reminded me to keep my day job (far afield from health care). All flippancy aside, I thought this was somewhat plausible. Guess not.

I will keep on the dual course - and search out an ENT who ideally can do some better x-raying. Perhaps the endo will open it up and voila, they'll see the infection. Perhaps the clindamycin will do the trick. I certainly, certainly hope so.

I hesitated before putting anything in about Grant Achatz. While I guess his "celebrity" has helped somewhat in the fight against this disease, it hasn't done near enough to expose the overly high instances of misdiagnosis and general prevailing incompetence among the dental community with regard to OC. His story is "easy" to explain to people because he's so against what people assume is type for this disease (provided they know what the disease is in the first place) and because his condition was so grossly exacerbated by 1.5+ years of ignorance and mistreatment.

It doesn't mean his story is more important and I'm sure it's aggravating as ##%$ to so many of you who are working so hard to get early diagnosis/proper diagnosis to become routine. Your point about adequate health care/access to health care from a racial and income perspective is spot on and unchallengeable. I am about as patriotic of an American as you'll ever find and I still will forever find it mind-boggling that we're perfectly ok with determining the quality of both public education and lifelong health care based almost solely on an individual's net worth.

I'll keep you in the loop as I make my way from office to office. Thanks again so very much Brian. Your input is invaluable. And your service here, and your service "over there," is very much appreciated too.

Barb:

Your story isnt very much different than mine. Ex-smoker less than a pack a day, not a drinker, 45 yr old female, not the best teeth.

It wouldnt hurt to get an ENT or oral surgeon to check you out. You want to be sure of what it is and thats the only way. It could be nothing, but get it checked for your own peace of mind.

Christine

I wanted to revisit this post. A couple people sent me emails about my comments about shrinks. I wish to state for the record that mental health professionals have helped me in my lifetime, if only to ask the right questions, that allowed me to sort out my difficulties by considering other avenues of thought that I had previously not considered. My remarks struck some as flippant, and they were to some extent. I think that anyone that needs more help than their family/friends and OCF support groups can provide, they should certainly seek out the advice of a trained professional, and even add medication to the mix - such a selective seratonin uptake inhibitors if things start getting out of hand. I was on these drugs for some time and I belive they helped me from actually putting my head in the oven. (While I was lucky it was electric, you all get the idea)

Well, I'm reeled in on this one even without Brian's asking, "I hope that one of the real doctors here from dental will post his observations."
My opinion Barb,
I believe from what you describe in your post that seeking the opinion from an ENT may be unnecessary. After reading and posting on this site for almost a year and with my training and experience as an expanded practice general dentist what you are describing is most likely a dental abcess.
Teeth sometimes become necrotic (die) for no apparent reason even in the absence of dental work, grinding and trauma. There is not always pain associated with a dead tooth and there is not always x-ray changes that show a change in the bone around the affected tooth. When a mobile fluctuant fluid filled mass appears on the gum by a tooth that is mobile or between teeth there are usually no radiographic changes associated with the tooth roots. ( ..this is where dentists have to earn their money, pun intended, because they have to climb the ladder of differential diagnosis.)
By your own admission you have undergone extensive dental work, grind your teeth and have had a recent extraction of an adjacent tooth. All of these could be potential contributors to the death of the tooth nearest the swelling.
I would suggest that your next step should be seeing the endodontist. It is obvious that you are not a fan of dentists and that is of no issue. It is obvious that you are in tune with your oral health from your descriptions in your post and I feel you know what you should do but, it is really not appealing to you. I strongly urge you to listen to your dentist, visit the endodontist and take the advice that Brian has already given to you..
There are three ways to determine whether or not you have an abcessed molar; 1, with local anaesthetic open access into the pulp chamber and see if there is pus, brown smelly goo, or blood in the tooth. 2, with local anaesthetic puncture the soft mobile lump and see if pus comes out of it. 3, Get a prescription for an antibiotic, (Amoxil 500mg 3 times a day for 7-10 days or comparable drug) and see if the swelling goes down or disappears completely. After all, an endodontic procedure (root canal) or draining of an abcess should be painless and is far easier on you than the rigors of cancer screening and diagnosis not to mention the increased time and emotional stress of waiting to find out what is going on.
I always remember my oral pathology professor's quote about this type of situation, "When you look in a horse barn look for horses they are obvious, the zebras are easy to spot."

Brian,
In my humble opinion, you provided up to date accurate information. Not your usual use of words but, certainly not flippant or condescending in my read. I have benefitted from your vast knowledge and have learned from you and your posts. You have been of personal and professional benefit to me, my family and my practice. I am a much richer person to be acquainted with you. (Praise deserved and Intended)
I have also benefitted from my local psychiatrists, psychologists and there wonderful chemicals. Many of you who have read a few of my posts know that I am not completely stable.

I hope the above was useful.
Contact me if you have questions.
Cheers,
Mike

Dr Mike

Thanks a million - your post has helped make me feel so much better. You're right about teeth dying for no reason (of course you're right, you're a dentist and I'm ... not a dentist) and my history has been no pain associated with abscessed teeth, so I'm not sure why I expected screaming pain with this one.

I'm not sure if you meant another antibiotic on top of the clindamycin, but as the clindamycin seems pretty potent, I'll stick with it unless I have a reason to switch.

I'm still going to see the ENT, just because I want an additional voice in the mix. I have an endo appointment for early next week and I expect I'm staring down two root canals -no surprises there. If I were to write a book, its title would surely have to be When Bad Teeth Happen to Good People.

Thanks again so much for your insights and input - very helpful.

Brian - for what it's worth, I didn't take your comments regarding therapy as anything more than you being snarky and flippant, neither factor problematic in my eyes. I can't imagine someone with your knowledge and experience would question the validity of therapy. Questioning its helpfulness to you personally is your g-d-given right, however...

Barb,
You have done a 180!! Good for you. Now go forward and keep that new outlook in the forefront.
I missed the fact that you were already taking Clinda. So no need to switch. It's more potent than amoxil but, can cause GI upset and is know to be a factor in developing c.dificile infections. So if you develop the trots get to your doctor or you could be in for a ride. Usually this only results from high doses over longer than average periods of treatment but, to know is to be able to react.
All the best!
(dentists are people too. LOL)
Cheers,
Mike

Dr. M. - Thank you for the vote of confidence and kind words. I just read your posting on tongue issues. I cannot begin to tell you how important your contributions and Jerry's are here on the board. There are so may oral cancer mimics, and other things that go wrong in the oral environment, that having REAL doctors with all those fancy letters after your names really makes the board a safe and credible vehicle to help people. Your extension of your time to generously help others is an exhibition of what is best in the human spirit. I thank you for you continued participation.

Brian,
It is my pleasure to be able to help. I'm sure Jerry feels the same way. If it wasn't for your efforts we wouldn't be able to contribute. Posting and providing information on this site has been a lift to make me keep up to date and as well a form of therapy. As you are well aware, I have been prompted to check my facts and get to the point (and conduct myself accordingly) on occasion. It's all good. I'm here in my usual capacity and will certainly continue to help out whenever I can. It is a challenge, on occasion, to remember that I have not examined or followed my normal algorythm when offering advice and opinion. I think I'm getting better with time without being totally vague.
As for the letters after my name, that's all they are is letters. D.D.S = Does Dental Stuff (yeah..I'm my own worst critic) An institutional designation, yes I worked hard to get them but, I believe the measure of the designation is how one chooses to represent them and further the profession. With all your efforts there are not enough letters to put after your name. I know you aren't in this for the recognition and that, in itself, is admirable.
I still look over my shoulder for my father when I hear, "Dr. Creighan", I am Mike and no more important than the next guy.
I do appreciate your praise Brian it means a lot coming from you.
I'm sure in your capacity you know as well as I do that criticism comes quickly and often...so the little pats on the back are much more appreciated when you get them.
Thank You.
Cheers,
Mike