I'm not new, formerly poster Ray1971 but unable to get into my account. So here I am...still kicking at 54!

I'm sure members have come and gone over the years--but hope everyone is doing well!

For those that are just going through these times, stay strong. I've been clean for 17 years.

Ray

New here and realizing I should have put my previous message in this forum column, so please forgive the redundancy:

Reaching out to say hello and share a little optimism.
In 2021, I was diagnosed with SCC stage 3. I had my entire oral tongue and part of my base tongue removed. I was on a feeding tube for a full year with limited speech and saliva, and aspiration challenges. I thought I would only be able to eat pureed foods for the rest of my life, and was seriously considering looking into disability because of my inability to verbally communicate effectively. It was bad. Almost 4 years later, I’m happy to say my speech has improved dramatically, I work and communicate full time, and I can now eat all foods with the aid of an assistive eating tool. The assistive eating tool allowed me to move food off of my tongue and towards my teeth for chewing and towards my throat for swallowing, which in turn caused what remaining tongue muscle I had left to become strong. Same for swallowing, the more I ate, the stronger my throat muscles became. By eating, I was basically exercising the tongue and throat muscles and keeping them from atrophy. I invented the tool so I could eat, and because I couldn't find anything out there for us. If you want more info, feel free to connect with me. There is hope-- we are resilient, and the body is wondrous.
Sending hugs to those who need them.
Angilee

Hello!
Reaching out to say hello and share a little optimism.
In 2021, I was diagnosed with SCC stage 3. I had my entire oral tongue and part of my base tongue removed. I was on a feeding tube for a full year with limited speech and saliva, and aspiration challenges. I thought I would only be able to eat pureed foods for the rest of my life, and was seriously considering looking into disability because of my inability to verbally communicate effectively. It was bad. Almost 4 years later, I’m happy to say my speech has improved dramatically, I work and communicate full time, and I can now eat all foods with the aid of an assistive eating tool. The assistive eating tool allowed me to move food off of my tongue and towards my teeth for chewing and towards my throat for swallowing, which in turn caused what remaining tongue muscle I had left to become strong. Same for swallowing, the more I ate, the stronger my throat muscles became. By eating, I was basically exercising the tongue and throat muscles and keeping them from atrophy. I invented the tool so I could eat, and because I couldn't find anything out there for us. If you want more info, feel free to connect with me. There is hope-- we are resilient, and the body is wondrous.
Sending hugs to those who need them.
Angilee

I had HPV p16 one year ago and six weeks of radiation ending the first week of August/2024. Very few chemo, maybe 6. I could not get rid of my dry mouth, no saliva and no appetite months and months later (Xerostomia). I heard about HBO Rx from someone who had the same cancer and side effects and he swore by HBO or hyperbaric oxygen. I go M-F for two hours in a chamber once a day. I am at around 30 sessions today and slowly I am noticing my throat is less constricted and I can swallow meds as there must be more saliva active. One oncologist on a consult before this said 3 of my 4 saliva glands were damaged and not working from the radiation. Has anyone tried hyperbaric Rx for radiation side effects?

I'm a few months late, but my husband had a partial maxillectomy to remove his palate in 2013. He has also been experiencing issues with his obturator. The fit is good (he says), very tight, but his molars on either side are loose and rotting. Either molar could fall out at any time, leaving him with no anchor to hold the obturator. If it happens, I guess temporary denture glue could help for a bit, but having any gaps drives him crazy. Gaps cause him issues with swallowing, speaking, having beverages or moist foods drip out through his nose...

He's been having a hell of a time finding anyone willing to do the flap procedure, or put in dental implants, or any procedure, to help. Radiation history is likely why, but I'm not sure. Two of his old specialists have died, others moved, one of his original surgeons refuses to do flap procedures anymore and highly recommends not to do it, and gave us gruesome examples he's seen first-hand, out of very genuine compassion. New contacts we've reach out to sound unfamiliar but 'willing to try' different surgical options (yikes & what the heck).

I wish I had something to offer you, right now. We'll have to travel to a find somebody who knows what to do. Might take months to get this sorted, but if you buzz back sometime, I'll update. If he could find a way to make an obturator work without flap surgery and without molars, he absolutely would do that.

Hi I’m recently diagnosed with stage 3 tonsil cancer with Mets to lymph node. I’ve had 2 of 6 Cispan treatments and 11 of 35 daily radiation treats. A couple days ago I started the lidocaine mouthwash/ rinse and am not having much luck with the mouth/throat pain. I’m not sure if it’s a technique thing like swishing and or gargling or kind of soaking when using the rinse or if there are more effective things, any ideas, suggestions or expectations of more things to come that’s the hardest part for me is knowing what to expect so I can prepare myself. So I’m not in a constant state of wondering what’s coming next? Any thoughts or input would be greatly appreciated thank you.

Hi CrisCQ,
I'm not sure I'm much help. I have only had moderate dysplasia biopsy and then a very partial removal with clean margins and some biopsies since then. I too feel that the foliate papillae are larger and redder since the dysplasia was found and surgery was completed. I have asked about them and told they are normal as well but they definitely seemed enlarged and I too wondered about more possible dysplasia or something else going on. I have tenderness still in the area of the tongue removal and some leukoplakia areas that have since formed since surgery and biopsy. I am working with an oral medicine doctor along with my ENT and is looking at this and says its probably not normal I am feeling pain in the area so he will see me in a month.
but like you the foliate papillae have no pain just look red and enlarged. Let me know if you find out more or get a biopsy, I am curious. It can definitely be worrisome. Wishing you well.

Huh, I can't believe I did not add in this thread an update after my general anesthesia very partial glossectomy.

It's in the other thread I believe.

Anyway last February (2024) an ENT Onconology Surgeon did a very minor partial glossectomy around the biopsy site, under general anesthesia, to get sufficient margins around where the cancer was found and to also look for other cancer.

He did a throat scope as well.

Nothing of concern was found on the throat scope.

Pathology on the excised tongue showed no further cancer, but there was more dysplasia, and if I recall correctly, it again extended to the edges of the tissue, and I believe they termed it "low grade" dysplasia (and I think some folks use low grade to include minor and moderate dysplasia).

He did note some patchy white leukoplakia I believe in the retromolar trigone that I had asked about, but noted it was more consistent with Wickham striae, and was not currently concerning to him, although he'd keep careful attention to it on follow ups.

The first year post surgery it was follow ups every couple months after it healed.

This second year it is more every 3 months (sooner if something develops of course, they'd get me right in, and I send them pictures and ask questions as they arise via text messages on the patient portal, had a few odd cankers that erupted suddenly and then slowly healed, so far nothing has required an unscheduled urgent visit).

The one tiny spot, that I thought may have been (and may still be) a suture scar, still remains. A white tiny bump, way smaller than the pimple. Painless, and not changing. I need to remember to ask if that's normal for a suture scar like that to become permanent.

It doesn't bother me, it's just there.

A few more patchy leukoplakias, one below the scar(s).

The surgeon doesn't think it's necessary to biopsy those as of yet, until at least they become palpable to him. He is happy to do it, if I request it at any point.

He thinks in all liklihood, at worse it would likely just show more dysplasia, and we had that discussion about chasing dysplasia can be a loosing game, especially if it is scarring resulting from sutures and trauma to the tongue during surgery, and he agreed with the other oral surgeons.

We discuss it and he looks at all the abnormalities each visit.

I see him again in a week or two here shortly.

The area forward of the tongue still has that patch of tissue that "blanches" when my tongue is stretched out at time (capillary bleaching they believe, but oddly to me just that oval patch that does it, right adjacent to the scars, abutting right up to it). It also has a visibly smoother texture appearance, and feels kind of rubbery when you slide your finger acrross it. The rest of the tongue in that area, with saliva, the finger just glides over the tongue skin, even over the scars. That blanching oval region, my finger kind of grabs like a squeaky windshield wiper blade on a windshield. Kind of grabs and releases, grabs and releases, but the texture is smooth. Just odd observation. It is more sensitive to touch than all the other surrounding areas too. I can rub the scars vigorously and there is no discomfort. Rubbing this other vigorously isn't painful per se, just uncomfortable. Forward of that area there is a small short "ridge", that is about midline. That too is sensitive in a similar manner.

At times that ridge is more prominent. I do not believe it is merely from the fitting of the tongue to the space between your upper and lower teeth, but it does approximate that position, I think. I can't force my tongue to rub on my teeth in anyway that is the lest bit uncomfortable, teeth closed or opened.

One thing about documenting this, is if I did not, I could easily forget that this specific area IS NOT scar from any of the other procedures.

I'll need to remember to ask him about the area to the back of the scar, deeper. It looks to me as if there is some leukoplakia extending from the scar back as far as I can see in the mirror. I am pretty sure I could easily see the entire sutured area in the mirror and it stopped well short of the limits of what I could see.

It would be nice if medical science could develop Star Trek level PET/CT scans that could detect microscopic, or at least sub-millimeter tumors. I am willing to play guinea pig, if they want to test out any new techniques in imagery!

As I understand it sub-centimeter PET/CT is still a goal too far, and it seems as if my excised tumor, quite likely would not have shown on a scan? (I had an unrealistic expectation of what current PET/CT is likely to show)

So all these other minor lesions, it's this waiting game, and trying to figure out to let things ride, vs. keep biopsying.

So that's an update after the very minor partial glossectomy pathology results and where things are now.

I am another never smoker, only tried chewing tobacco like twice as a teenager 3 decades ago, very occasional (3-4 times a year) social drinker, 1-3 drinks typically.

I did used to use alcohol containing mouthwashes, quite a lot in my 20's and 30's. That's the only risk factor we've ID'd, in my more or less idiopathic generation of disease.

Have not used the alcohol containing mouth washes since, just tooth paste for me at the moment.

R/
CQ

I spoke to a VA patient advocate today i will be able to work with MD Anderson, if I get a diagnosis. Everything is hinged on the results of the consultation. I asked the patient advocate about the timeframe for the consultation, he called around and said the are doing additional tests and stains and there is no timeframe just be patient. I hate when they say that, but I guess it’s the only thing to do.

Hi. I am a caregiver for someone who had almost the same situation as you. She lost more teeth and also had radiation. She was told to come for scans every 3 months. She already had a recurrence well before the 1 year mark so we are back in treatment now (at MD Anderson). It does sound odd to me. You should get a second opinion, I would think. Though others here have a lot more knowledge and experience. This is my first post, so I am sorry for any breach of etiquette etc.
Kristen

Just a bit more info: She had clear margins and all of her scans were clear. They just decided to biopsy something that looked questionable and it ended up being cancer.

Hello Greg124,

Welcome to the OCF Forums,

My two cents, take them with a large grain of salt and seek professional medical opinion:

If you have any kind of even painless white or red patch in your oral cavity that has not gone away, and that cannot with absolute certainty be explained as something benign, I would be seeking a biopsy as soon as you can, or an explanation that fully satisfies your concerns by a medical/dental doctor on what the definite cause of that unhealed lesion is. (and I'd still be seeking a biopsy if I were you, even if you have to insist on it)

I would call your dentist immediately and request an urgent appointment to see about an oral surgery consult for biopsy, or possibly an ENT surgical consult for biopsy if it is too far back for an oral surgeon to be able to biopsy. They may see what is going on and it may have an obvious mechanical/dental cause of friction that you mentioned. But I'd be asking those questions very pointedly. Can you with absolute certainty say a biopsy is not at all indicated?

This does not mean it is necessarily cancer, but you want to find that out as soon as you can, to catch it early. Or if it is potentially precancerous condition. Or if it is absolutely benign. Biopsy is THE way to know which.

I had a "potentially precancerous condition", leukoplakia (white patch) on my tongue, that when biopsied came back showing tissue with moderate epithelial dysplasia (abnormal but not cancerous cells in the oral epithelium tissue layers.)

That triggered being booted to another oral surgeon who specialized in cancer and monitoring and treating dysplastic lesions for annual follow ups.

I was told the lesion I had, presented a roughly 1 in 10 chance of the tissue and surrounding area spawning cancer at some point in my life.

About 4 years later, a tiny little pimple like protrusion errupted in that same area, that did not go away and was just ever so mildly painful (not like my canker sores which can be brutal).

That thing was biopsied and came back microinvasive oral squamous cell carcinoma. The pimple thing was probably the size of a nerd candy piece.

It was caught nice and early, just barely past being carcinoma in-situ. So we have high hopes the very partial glossectomy I underwent may be curative.

Still more dysplasia was found during the partial glossectomy.

So the whole field cancerization phenomenon means apart from any possible missed cancer (very unlikely) that was already there, new cancer tumors may yet arrive out of the potentially precancerous tissues that are known to still be there.

Best case scenario if you get biopsied it comes back confirming it is some benign condition, no need to worry at all about it.

Middle scenario would be well the tissue isn't completely normal, (dysplasia), and you are at a heightened risk of developing cancer. Then you'd watch it like a hawk and any time it changed for the worse be looking for another biopsy and immediate work up.

Not great possibly scenario would be it is already cancer, but you want to know, and you want to know that as soon as you can to get your treatment plan figured out.

Another thing to ask about, (and these forums really should just be a basis for you to figure out questions to ask your doctors/dentists, you'll want it straight from the expert, not that they can be absolutely relied on to make the right calls, but they should be able to explain to you the why's and wherefore's and if you come prepped with intelligent questions you can hopefully advocate well for yourself, and don't be shy about seeking a second opinion if they can't answer your questions and concerns to your satisfaction) is the theory (I think) that even constant irritation from bad teeth fitment, sharp dental appliances, etc... that kind of chronic irritation itself can be a cancer trigger.

So even if a biopsy came back benign, if things changed over the years and slowly gets worse or something like that, it would still seem wise to me to once again see if a biopsy is indicated.

Best wishes as you move forward, hopefully just some dumb dental rub irritation that can be explained definitively and fixed quickly so all lesions heal. But if it can't be made to be healed from obvious dental causes in a couple/few weeks, I'd be pounding that door down for a biopsy.

Sincerely,

CQ