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?