Hi there,

The summary of this post is a question: Can chronic irritation lead to cancer? Has anyone else here had the experience of a long-lasting sore caused by involuntary movement of tongue muscles?

I feel like I'm all alone, fighting the medical establishment to pay attention to me. The path results of last week's surgery lead me to ask if anyone else here has had the same experience.

Here's my story:

Since March 2007 I've had a sore spot on my tongue. It's felt like my tongue was involuntarily rubbing against my back right molars, causing irritation. It was more painful after sleeping, suggesting that my tongue is moving in my sleep, and noticeable after I spent time concentrating on something.

It was biopsied in March 2008, showing only "inflamed tissue." The doctors/surgeons didn't have any suggested treatment for "involuntary tongue movements." They didn't even seem to trust that the cause WAS tongue movement. The whole thing stumped them, so they left me to suffer with chronic tongue pain and irritation for 3 years.

In Oct 2010 I went back, saying I'd had enough with the constant pain in my tongue, and insisting they help. A 10/18 biopsy showed cancer (SCC), and MRI/PETCT scans showed a 2 cm tumor in my tongue. On 11/15/2010 I had a partial glossectomy & neck dissection.

Here's the shocker: there was no cancer to be found anywhere in the tissue removed from my tongue, lymph nodes, or salivary gland. The 2 cm firmness was apparently inflamed tissue and scar tissue. This is apparently unusual, but not unheard of. The surgeon gave 2 possible explanations: either the cancer was so small it was removed with the 2 mm biopsy, or the biopsy stimulated my body's immune system to kill off the remaining cancer. The latter scenario is apparently unlikely for this type of cancer. I asked if such a large mass of inflamed tissue is common for this size cancer, and the doc said No, it's very unusual.

I'm relieved the cancer is gone (hooray!), but also angry.

My own guess for years has been that involuntary tongue movements (esp at night and when I'm concentrating) have led to a spot of chronic soreness and non-healing lesion. Now it seems that this has also led to cancer. And a totally unnecessary neck dissection!

If the doctors had listened to me more, made an effort to address this problem, the whole surgery and experience may have been unnecessary!

Has anyone else heard of such a thing? Did anyone else have an experience of friction --> irritation --> chronic inflammation --> cancer?

Any ideas about doctors who may have experience addressing involuntary tongue movement? I've scoured the internet and not come up with much.

Appreciatively,

Rahel

P.S. For anyone with extra time on their hands, details of yesterday's unfoldings are blogged at blenderninja.

Geez Rahel:
Since I've never experienced anything like you described, I have nothing to offer except my sympathy - I have experienced, however, results/diagnoses from doctors that were pure wrong, so I sympathize with you there also. When I first had a slight swelling under my chin that was soft and didn't hurt, but disturbed me because it was there, my family doctor diagnosed it as a swollen lymph node from a sinus infection. It didn't go away, so time went by and I decided to have an ENT check it out -at my insistence, he had a needle biopsy done, which resulted in a NEGATIVE result. Time elapsed, swollen place stayed, and I noticed my right tonsil was a little red. Doctor checked it and gave me antibiotics. I still checked with my family doctor to see if he could do some tests, and nurses called me paranoid. I went to yet another ENT and demanded I have my tonsils out. Under my right tonsil was squamous-cell cancer which had spread to the left side nodes, Stage IV. Hey, then the doctors started paying attention. So, I guess being really aggresive, especially when you "feel" something's not right, is what we should do. I had 7 weeks of chemo and radiation ending in Feb '09; I still have side effects from the radiation and have great difficulty eating (swallowing). I wonder if the time that elapsed from when I first noticed the slight swelling is what elevated the SCC to Stage IV? Anyway, there's nothing that can be done now, and glad you kept after them, which shouldn't have been necessary. I hope you get replies from Forum members who have had your symptoms, and keep in touch.
julieann

We have discussed this several times over the years and I'll let the Brian's and the Jerry's add their technical explanation but it does appear possible that constant irritation can contribute to cellular damage which can lead to cancer.

David,

So glad to wake up to hear that. I assume I'll figure out who the Brians and Jerrys are in the coming days, and I look forward to hearing their perspective!

I unable to successfully find prior discussions of similar topics (maybe I didn't search for the right words?), so if anyone knows where to find them, let me know, and I'd love to be able to read them over.

Appreciatively,

Rahel

Rahel,

I sent you a private message.

Rahel - I was a tongue chewer in my sleep for years(I now wear a mouth guard). I would wake up many mornings with my tongue numb from biting on it. And guess what, SCC on the left side of my tongue. My Dr's do not committ that the SCC was caused by the chewing, but say it is definitely a strong possibility given the fact that I am a non smoker and was not HPV.

I see Jerry has already sent you a PM so by now you know who the Jerry's of OCF are. Brian is the founder of the OCF and our leader and knows as much about dentristy as any dentist.

David,

I hate to say it, but probably more than many dentists, and especially about Oral Cancer.

Hey everyone, keep those suggestions coming!

My dentist has easily been the most attentive medical professional through years of me being in pain from tongue rubbing against the teeth. He's the one who encouraged me to get a biopsy in 2008. And as Kaiser doctors kept repeating their mantra "that's not my job", my dentist has been going out of his way to brainstorm a solution.

He's had his mouth-guard-maker try multiple times to create a guard that would stop the irritation, but I have such a unique circumstance, that we never got it to work. We've also tried dental wax, gauze, and a doctor proscribed steroid paste that worked on apthous ulcers but not on this.

Then I was diagnosed with cancer, and now I'm stuck still without a solution to the tongue-rubbing-against-the-teeth problem.

I'd really like to find someone who is a medical professional who says "involuntary tongue movements, we deal with that all the time!" and has a solution, which will work, and which I haven't yet tried.

:^) Rahel

Have you tried an Oral Surgeon at a CCC?

Hi David,

Thanks for your post, and thanks for taking the time to help me think this through! I'd love if you could give me a little more info about what you're suggesting, or why you ask that. I'm new to all this, so I can't tell what you're getting at.

In response to your question, there wasn't a group specifically identified to me as a "comprehensive cancer center," but a number of doctors who serve on the Head & Neck tumor board together met with me and evaluated my case before surgery - including oral surgeon, chemo & radiation docs. All suggested surgery as first step. The oral surgeon is apparently quite good, and serves as an oral cancer consult on difficult cases throughout the northern Calif Kaiser region. (However, that same oral surgeon is the one who saw me years ago and didn't have any solution for the chronic tongue movement/pain - basically said oh well I don't know what to do.)

So if you're asking whether an oral surgeon who specializes in cancer has seen my case, and has consulted with other cancer docs, the answer is yes.

Can you tell me a little more about "the question behind your question"? Were you just trying to make sure I had been seen by adequately trained oral cancer professionals? If so, the answer is yes.

Rahel

Here's a link to OFC's CCC's

CCC's

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

BEST CANCER HOSPITALS

http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/

Re your other question...yes I just wanted to make sure you have exhausted your treatment options. I personally got 5 different opinions before I let anyone treat me and I would be dead today (most likely) if I had stopped at numbers 1, 2 or 3 so I'm always an advocate of seeking multiple opinions even if you think you've been to the best.

Hi David,

Thanks for the feedback. At the moment I've got a little different focus than you had, perhaps because my cancer was just stage I, and there was no cancer in what they thought was my tumor - it was just inflamed tissue, possibly from years of chronic irritation. My detectable cancer was limited to the biopsy, and my focus right now is on:

How do I find a medical professional familiar with addressing involuntary tongue movements?

It seems cancer specialists really don't know/care about involuntary tongue movements. I'm concerned that if I don't find someone to help interrupt the tongue movement, then my healing process is at risk at the incision site, and cancer recurrence is a greater possibility. Plus the tongue movement leads to constant pain.

Rahel

Perhaps a nerve specialist?

Thanks for everyone's help so far. Anyone else out there with an experience of SCC showing up on the same site as chronic irritation/biting?

Rahel

Rahel,

It has been suggested to me by a few doctors that chronic irritation could be the cause of my OC and OC recurrence. I�m in the 7% category with no know risk factors, and I had a recurrence this year on my tongue in the same spot as the first tumor. Although there were no rough edges on my teeth, my dentist made me a mouth guard to wear to hopefully cut down on any possible chronic irritation. I only started wearing it about a few months before it was confirmed I had a recurrence, but I suspected the recurrence a few months before it was confirmed with a biopsy.

Susan, that's interesting to hear. Your docs are suggesting that chronic irritation is the cause, and my docs keep denying it. Glad to hear there are at least some docs out there who acknowledge the possible relationship between chronic irritation & cancer.

I'm trying to find someone to help with the chronic irritation, and hope that I soon find someone who will be able to make an effective mouthguard - the "usual" ones, and even some customized ones, didn't really help enough.

I do not believe that there is a clear answer to the question" Can chronic irritation cause cancer?"
It is hard to separate the cause and effect in my opinion. A sore spot may be sore because it is precancerous. Opinions and believes by doctors about such a connection is mostly anecdotal and not based on strong data. It is still a good idea to have any chronic sore place checked by a specialist.

I Brook MD http://dribrook.blogspot.com/

Hi all,

Here's an update - apparently the pathologist made a mistake in his initial review of my tumor tissue. He revised his path report, stating that there was cancer after all, in the tissue removed during surgery. The initial biopsy slides - done at UCSF not Kaiser - used a special keratin stain making the cancer visible, and the Kaiser pathologist had been unaware of that special stain when he first reviewed the surgery specimen.

The pathologist was very apologetic about the mistake. While this is less good news, it is also more comprehensible. In a strange way, it is a relief to have an explanation that makes more sense. I still don't need to do radiation or chemo, thank goodness.

I'm hoping to meet with the pathologist next week, to review the slides with him, and he can walk me through what was unique/different about my tumor which made it difficult to spot. Apparently my cells were "poorly differentiated" and "spindly" which made them different from the usual cancer pattern.

The pathologist said there's a reasonable concern that chronic irritation could lead to cancer, which was helpful. Maybe that will be the backup I need so the medical system finally acknowledges and addresses my irritation from tongue movements, which cause me pain and which I can feel myself continuing to do.

Thanks for all the support.

Rahel

My cancer was poorly differentiated but don't think that "poorly" means that the cancer hasn't got it's act together, quite the contrary, as this is the worst diagnosis.

Watch this cancer VERY closely.

Hi David,

Could you give me a little more info about that?

Thanks,

Rahel

Well this thread has realy made me think . Rahel I wear a mouth guard for roller derby and the part of my tongue where i had the SCC was where the mouth guard used to rub on. In fact I used to rub my tongue over the bumps of the guard quite subconcioulsy/unwittingly- so who knows? I also smoked for over 10 years (although quit a year before dx)so that's prob the more likley cause

[quote]
Here's the shocker: there was no cancer to be found anywhere in the tissue removed from my tongue, lymph nodes, or salivary gland. The 2 cm firmness was apparently inflamed tissue and scar tissue. This is apparently unusual, but not unheard of. The surgeon gave 2 possible explanations: either the cancer was so small it was removed with the 2 mm biopsy, or the biopsy stimulated my body's immune system to kill off the remaining cancer. The latter scenario is apparently unlikely for this type of cancer. I asked if such a large mass of inflamed tissue is common for this size cancer, and the doc said No, it's very unusual.
[/quote]

I also had no cancer found in the tongue or nodes after my surgery. the intial biopsy had apparently eliminated it all.

Monica, that's really interesting.

Here's an update in my case - the first path report following surgery was incorrect. Apparently there WAS cancer beyond the biopsy - but it was an unusual type ("poorly differentiated") so hard to be seen.

Once the pathologist looked at the biopsy slides, which had been stained with a special keratin stain by UCSF where they diagnosed me, he realized that he had missed the cancer when he looked at the surgery slides without such a stain, because he was looking for a more common pattern of cells. The pathologist was profusely apologetic and repeatedly said he should not have missed it - as head of the path dept he apparently had higher standards for himself than this. He explained how it got missed, and acknowledged that even though there are reasons, there's no excuse for the mistake.

He was also very patient-friendly, taking time to show me the slides, walk me through what the cancer looked like, etc. And he's now running additional slides WITH keratin stain - for some of the margins, and on the larger nodes and on an area where the cancer appeared to be near a nerve. It was amazing how obvious the cancer was with (vs without) the keratin stain - it showed up completely clearly.

Nonetheless, I'm still suspicious of the tongue-rubbing, and doing everything I can to get a solution.

Rahel

I wasn't given as much info on the pathology as what you were. But my intial biopsy showed moderate cell dysplasia which was treated in day surgery by surgical excision (bascailly they just scraped the surface) and I recovered and was eating normally within 2 days. The pathology results from the the scraping they took however showed 3 SCC "foci" - which from what they told me are tiny, tiny cells. From then on in I was refered to ENT specialists as previously I was being treated by dental specialists. THe intial dental surgeon I was dealing with felt we could just leave it be and monitor it, but the MRI and cat scans showed enlarged lymph nodes so it was all a downward spiral from there. I've had fleeting thoughts that the neck dissection and further partial glossectomy were unnecessary but I've found that dwelling on those thoughts is just too negative- I'm comfortable with the treatments that I've had as precautionary and hopefully preventative. The way one ENT surgeon put it was that they have cut out all the pathways therefore elminating its possible spread.
THe chronic irritation hypothesis is interesting, will be curious to see what others say.

Check this out. This site is great for the printed info. Anytime you need to go to the bottom of the page and click on SEARCH and it opens up to this site's info.

www.oralcancerfoundation.org/facts/stages_cancer.htm

Grade

The definitions of the G categories apply to all head and neck sites except thyroid. These are:

G - Histopathological Grading

GX - Grade of differentiation cannot be assessed
G1 - Well differentiated
G2 - Moderately differentiated
G3 - Poorly differentiated
G4 - Undifferentiated

Differentiation: In cancer, refers to how mature (developed) the cancer cells are in a tumor. Differentiated tumor cells resemble normal cells and tend to grow and spread at a slower rate than undifferentiated or poorly differentiated tumor cells, which lack the structure and function of normal cells and grow uncontrollably.

In other words, poorly differentiated tumors are able to cross all boundaries of tissue types (muscle, soft tissue, etc.), even into bone.

You sound like Me - your story is Exactly like mine - except for the tongue twitches! My story starts 6 years ago! When I had a molar capped. From that point on the left side of the tongue was irritated - in 2008 I had a biopsy it came back inflamed tissue... (in between I asked them to file down the tooth a little to limit the irritation but it didn't help) - this year I had another cap put in as my dentist recommended it for the tooth directly beside it. The situation worsened! Went back to my doctor - he sent me to a specialist for a second biopsy - it came back ssc - well differentiated - no
metastacies based on the CT scan... I am due for an MRI this week for staging (it's approximately 1x2 cm) then to the specialist 1st week in January hopefully - I asked the same question you did about the chronic inflammation - that's how I found you - I used to be a nurse so let me share - lung cancer - most of it is caused by smoking - what does smoking do? It irritates the lung tissue causing long term inflammation and cell changes - do you not think the same is likely true of this kind of cancer? I hope my outcome is as good as yours - despite the unnecessary pain you went through...
I am very much considering having the two molars removed... If nothing else it would minimized the irritation and pain - they initially thought I had lichen planus (I may still have it ) but while looking into that I read that allergies to the amalgam in some dental fixtures can mimic lichen planus - all in all - I agree with you - treat the cancer but the real issue HAS to be - figure out WHAT is causing the
irritation (or in your case how to stop your twitches) - I also need to point out - I go to the gym regularly am a vegetarian do not drink alcohol or smoke - nor do I do drugs! Paranoid - I had them test for HPV - I was negative - bizarre!
Best if luck!

I am sorry I didn't read through to the end here only the first page, Rahel.. I am sorry that they didn't catch it in the second pathology hopefully your margins were clear. But thank you for the update. It will give me a few extra questions to ask post operatively. I am to meet with the specialist hopefully next week. And get details on what he wants to do with regards to surgery. To any of you out there who have had the hemiglossectomy with the neck resection... can you tell me a little about the recovery, scarring etc? I do work - will have to take the time off but - it's hard to get an idea of what I am facing. Reading up on the procedures isn't as helpful as hearing from people who've been through it. I am scared but optimistic.

Re Chronic irritation causing cancer of the tongue

I am a dentist with 25 years of experience. i had SCC of the (L) lateral border of the tongue 8 years ago (at age 43), which was surgically and successfully removed (twice). I have never been a drinker or a smoker.
In my opinion, there is no doubt that chronic irritation can cause SCC. I have been �nipping� and biting my tongue for a long time, causing an ulcer on the tongue, which had been biopsied twice (with a negative result both times) previous to the SCC diagnosis.
Here is my theory. I have a narrow palate, courtesy of 2 upper premolars extraction when I was in my teens. The narrow arch had not accomodated my tongue well, as was shown by scalloping on the lateral borders of my tongue. Scalloped tongue is a tell-tale sign that the upper arch is too narrow. It follows that when the tongue �appears� to be too big, it is very easy to bite the tongue inadvertently during the course of normal talking, eating and swallowing. Furthermore, i have been nipping my tongue while I was asleep, my wife has frequently heard my teeth �clanking� together while i was asleep. My understanding is that when the tongue lodges in between the teeth, it prompts a proprioceptive reflex for the mandible to rapidly elevate, brought on by the receptors in the periodontal ligaments of the teeth. This is a similar action to the knee jerk reaction when the knee is tapped. When the teeth chronically irritate the tongue, it is feasible that there would be cellular changes in the tongue tissue.
So there is another reason not to extract teeth for orthodontic reasons. Extractions will only further collapse the already underdeveloped arch.

Interesting. The chronic irritation thing here in the US has never been proven, though speculated on greatly, the subjects are mostly denture wearers, and as a dentist you know there is no such thing as a happy lower denture patient, particularly as they age and the ridge gets smaller. Those things move around against the soft tissue a lot. But any look at the situation here (as a cause of malignant transformations) has neglected to remove bias. Most reports have not excluded (or properly documented) other known risk factors in their published opinions and patient populations examined, of patients such as tobacco use.

You would think that chronic irritations mostly likely cellular changes would produce hyper keritosis to protect the tissue. We see this commonly as a linea alba on the cheeks of patients, also from chronic nighttime contact with the juncture of the maxillary and mandibular arches.

I wish that we had a peer reviewed paper that addressed the cellular changes from things like this since in the OC community people are very divided about it.

I have met online three others in this forum, who, like me have no accepted risk factors for presenting with cancer of the oral cavity, 3 of us tongue, one buccal. All four of us suspect chronic irritation, and, while we cannot prove the connection, each of us has our specific recollections of habits, etc, that we believe set up an irritation in the area affected.

My husband is a dentist who used to believe chronic irritation was not a bona fide cause for oral cancer. He now personally thinks differently.

Yes, I wish there was scientific research on this topic. When I participated in a nutrition survey for oral cancer patients recently, I thought to myself then how interesting and possibly helpful it would be if someone could survey patients to see if irritation played any role in their oral health.

Anne

I totally agree... I am a non smoker, non drinker, vegetarian who used to work out daily. In rads right now so my one hour work out has turned into 30 minutes and two daily dog walks with a yoga thrown in here and there. I had a bad molar on my left side for years... One visit to the dentist he noticed a white thickened patch and sent me to an oral surgeon they removed it.. Biopsied it... Came back as thickened skin - perhaps the hyperkeratosis? Brian mentioned? So once it was removed things seemed to be okay.. (this was 2002) it was sensitive in that area but no real problems. Jump ahead to 2005... I had a that bad molar capped ( it was merely a shell of a tooth before) from that point on my tongue was irritated - not badly but enough to be uncomfortable. I let it go thinking it was because of the molar... Though I had them file it down once or twice with no success. This went on for 2 - 3 years. I finally had a biopsy - I could feel the thickened mass there under my tongue but there was a large area of dysplasia too. Biopsy came back inflamed tissue. I then went and had that molar filed again, and I had allergy testing thinking it was related to the possibility that is was eating something I was allergic to. Well I'm allergic to a lot of things... This past summer I had the molar beside the capped one also capped... The situation with my tongue got worse, I finally had another biopsy - this one came back SCC. And the lesion was 1.5 x 2.5 cm. After I got the diagnosis I was looked at a few sites, and one of them actually listed chronic irritation as a cause of scc.

I totally believe that chronic irritation can cause cancer. That's what happens with lung cancer... Chronic inflammation leads to cell change. Also isn't that why cancers of the tongue, lip and oral mucosa are blamed on smoking? That's what smoking does, chronic inflammation, and irritation of the lungs mouth and lip ? Same principal different cause. I used to be a nurse and a, familiar with the workings of the body, so my first question of course was why?

There should be more studies on this.

My mother's doctor said that her tongue cancer was probably cause by chronic irritation too. My mother doesn't smoke nor drink. The doctor only notice that her left molar was extremely sharp, and my mother always hurt her tongue by biting into it.

When the lump on the underside of her tongue first appear, she thought that she must have bite into it again. And she used the evil mouthwash hoping that it will help with the healing, but after a few weeks, it's clear that the lump wouldn't go away on its own. And she started to have pain in the ear, and she just think that since she has DM, the wound might take a little bit longer to heal.

The ENT doc who dx her said that the cancer was caused by chronic irritation. While she can effectively repair the wound from biting when she was young, after 60 years of biting, something simply went wrong this time round.

I am curious how wide the upper arch of people who had SCC of the tongue. Mine is only 29mm, but i'm OK now as a third of my tongue had been excised. The upper arch is generally 38mm, measured from the lingual surfaces of the first molar to the other. Narrow arches are epidemic, we see them everyday at our practice. The resultant scalloped tongue is also linked to OSA.

Hi Jack and welcome to a fellow Aussie and dentist from the beautiful Gold Coast
As you can see by my signature my cancer was floor of the mouth.
However since then I now have constant issues between the flap and tongue (top).
While my last biopsy in March did show no malignancy part of the report did say...
�The underlying stroma is composed of fibrovascular connective tissue with a patchy perivascular chronic inflammatory cell infiltrate.
Diagnosis TIP OF THE TONGUE: CHRONIC HYPERPLASTIC CANDIDIASI."
My concern as it appears to be for others is that the chronic irritation can turn into cancer.
I am happy to send the whole report and photos' by PM or email and when I get a chance will try taking measurements.
Let me know if you need help adding a signature.
Gabriele

Ii think I have a pretty high arch in my mouth but I do have a cross bite and a narrower bite than most. Don't know if this helps.

ThanksCheryl.
A cross bite and high arch are definitely tell-tale signs of a narrow upper arch. The upper teeth should be outside the lower teeth when they meet together, like the lid covering the base of a box. A cross bite occurs when one or more of the upper teeth is inside the lower teeth, when biting, usually due to the narrowness of the upper arch.
I'm keen to get measurements of your upper arch, (and others), while somebody else can measure It intraorally with a ruler, it is most accurate if you have a model of your arch. Need to take an impression, though.
One of my colleagues has suggested that I should write an article and submit it to a dental journal, but I don't have access to a database, any suggestions?



Jack.

Very interesting about narrow upper arch and scalloped tongue being linked. Both my upper arch and jaw are narrow and my tongue is scalloped, particularly on the right side. I also have a pronounced linea alba on the left cheek. I've been wondering if this was a result of the Bell's Palsy I had on the left in 2002? Ever since then my left cheek lies very close to my teeth on the left and my tongue has tended to lie more to the right side of my mouth.

I've mentioned this to my dentist and everyone else but nobody seems to have a clue.

@Jacko- you might want to contact Dr. Brad Neville, he is the senior dental pathologist at the Medical University of South Carolina in Charleston. He might be able to give you some leads. He and surgeon Terrence Day wrote a very interesting article on oral cancer for an oncology journal a couple of years ago. I don't have the copy in front of me just now but you can access it on the web.

I can measure my arch as I do have plaster casts because of the flouride trays - how should I go about measuring it.

Cheryl,
I use a digital caliper to measure the width from the inside surface of the left first molar tooth to the inside surface of the right first molar. Otherwise use a ruler and do your best to get the most accurate reading. The ideal width should be 38mm.

Thank you Catherine for your suggestion re Dr Brad Neville, i've just started reading his excellent articles.
It's interesting about the Bell's Palsy. Nobody could know for sure, but it seems logical to think that the linea alba on the same side of the paralysis, was due to chronic irritation on that side, ie, cheek biting. In the absence of pain sensation due to biting, there is no protective mechanism for withdrawal. Re scalloped tongue on the other side, it means that the upper arch is too narrow to accommodate the tongue, ie it's 'squashed' against the teeth.

Jack

Jack,

I'll be very interested in any additional info you find and look forward to reading your article. Please be sure to post a link.

Jacko, thanks for your post. I'm just checking back in on the site now, and appreciate hearing from someone else who had a similar experience.

I didn't follow all the details of what you wrote about the "too large" tongue and/or narrow palate, but it sounds really similar to info I got from a dentist who works at the Univ of Pacific dental school in San Francisco. And a prosthodontist at UCSF explained how part of my repetitive tongue behavior is likely related to the shape of my teeth and jaw, since as he explained it, the tongue movements are generally guided by the shape of the surrounding teeth and mouth.

It's all pretty complicated, and hard for professionals to study since it's all inside the mouth, difficult to see and observe. Guess we'll just need to wait for the studies to catch up with our experiences!

Good luck with everything, and thanks again for posting!

Rahel

This has been a very interesting thread. For a long time I have been "chewing" on the left side of my tongue if I fall asleep in a chair. I have definatley gotten a small calis there. But...my cancer was not only HPV positive but was p16 driven, meaning not only did I have the HPV virus at one point but that it "caused" my cancer. It's been frusterating thinking about all the ways I've neglected my health with drugs, booze, butts, not eating well and only speratically excersizing. And then to think truth be told that my cancer was sexually transmitted. It stands to reason that (although I have quit smoking) I have not really been gung ho about changing my lifestyle (except for not wasting time anymore and making the most out of every day)but my sex drive is GONE. Sucks!!! I wonder if given the fact that I have contracted this SCC from the HPV how that effects any chances I might have of getting more cancer from the irritation on my tongue. Probably doesn't change a thing. I'll be down at Tufts for a head and neck cancer lecture by my surgeon Richard Wein and I will be sure to ask.

Yes. take notes!!! I believe that any kind of long term irritation can cause cell changes - it makes sense - re: lung cancer etc..

Have an awesome day hope you're doing well!

I never lost my sex drive but I did loose the ability for a while in the throws of Tx. I was very determined to reclaim ALL of my pre "you've got cancer" life as soon as possible.

This really is an intriguing thread and reminds me so much of my experience, years ago as a leader/rep with La Leche League, an organization helping mothers who want to breastfeed. We often had mothers who came for help with "plugged ducts" (redness, soreness and lump in one area of the breast) and we would relay the medical advisory board info (as well as personal experience) that this was due to (as one doctor noted) an "indiscretion on the part of the mother" i.e. wearing a too tight bra, wearing a bra at night or not completely emptying the breast at each feeding. This type of "irritation" was very simply taken care of by applying heat or standing in the shower with very warm water running over the breast and massaging it downward. Research does indicate that there is less breast cancer among women who breastfeed, but I wonder about the connection between the plugged duct, breast mastitis or breast cancer. Looking forward to more info on this chronic irritation theory.

Rahel-

Has anyone heard anymore on possible exercises or guards that may be able to help here? Post surgery- I am finding it very uncomfortable & my tongue is definitely seeming too big for my mouth. I am wearing my mouth guard pretty religiously & am working with my dentist to improve it.

The dentist at Sloan said if this remains an issue post radiation they could always do a root canal )assuming mouth can still open wide enough) and shave the teeth all the way down.

Maybe my tongue will fit again after enough time passes after my rads cycle.

Please keep posting with any new findings!!

Thanks!!

Your tongue should fit normally at some point in nov 4 I will be 6 months out of rads - as time has passed my tongue has shrunk considerably. My SO saw it last week and said he could debulk it at some point - I saw my plastics guy and told him this and he said nope. - wait. radiation is a natural debulker! (I felt the same way I figure I'll wait a year or so. And then see) however because the new side was so swollen It was jamming my old side up against two misaligned teeth I have in the back causing welts and pain. I told my dental oncologist this and told him I wanted the teeth filed down.. He did it... Even though he kinda scoffed at the irritation theory - but let me tell you the welts are gone and so is the pain... And cell change can be brought on by chronic irritation... Just look at lung cancer... I know you didn't have a reconstruct so you should heal faster.. Good luck!!