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!!