Hello everyone,
Ive joined this forum on behalf of 66 yo my father who was diagnosed with stage 4 floor of mouth cancer. He doesn’t speak fluent english but i wanted to join to ease both his and my mind by reading other people’s testimonies.
He went through a 12 hour surgery (neck dissection) that consisted of removing a small part of his jaw bone and putting a titanium plate across the bottom for support. He also had about two third of his tongue removed and replaced with a graft from his left thigh muscle. He then had to have lymph nodes on either side of his neck removed and also his left thyroid removed (benign tumor in the thyroid).
It’s been almost 8 weeks post op and we are finally starting radiation today. The doctor did not mention chemotherapy being needed so i am assuming that only radiation is the plan as of now. He and I are quite anxious about starting radiation as we haven’t heard the best things. Very worried about the side effects that seem to last a very long time. Is there anything we should know or any helpful advice that we can keep in mind as we dive into the next 6 weeks of treatment? Would love to hear experiences, success stories, precautions, and any updates on post-radiation life.


thanks so much, you are all so incredibly strong and resilient,

Hello everyone,
Ive joined this forum on behalf of 66 yo my father who was diagnosed with stage 4 floor of mouth cancer. He doesn’t speak fluent english but i wanted to join to ease both his and my mind by reading other people’s testimonies.
He went through a 12 hour surgery that consisted of removing a small part of his jaw bone and putting a titanium plate across the bottom for support. He also had about two third of his tongue removed and replaced with a graft from his left thigh muscle. He then had to have lymph nodes on either side of his neck removed and also his left thyroid removed (benign tumor in the thyroid).
It’s been almost 8 weeks post op and we are finally starting radiation today. The doctor did not mention chemotherapy being needed so i am assuming that only radiation is the plan as of now. He and I are quite anxious about starting radiation as we haven’t heard the best things. Very worried about the side effects that seem to last a very long time. Is there anything we should know or any helpful advice that we can keep in mind as we dive into the next 6 weeks of treatment? Would love to hear experiences, success stories, precautions, and any updates on post-radiation life.


thanks so much, you are all so incredibly strong and resilient,

Hello Danbert, steve1 and JamesD,

I find it hard sometimes to discern between survivor guilt, which I have recognized it, and living life to its fullest given my daily side effects since caner free from HPV p16 positive in the spring of 2024. Lots of radiation to cure the cancer however since that ended in August/2024 I have terrible side effects of a dry mouth or xeorstomia and absolutely no appetite. I am currently going daily for two hours for hyperbaric oxygen Rx after reading it was successful for a patient with the same cancer and side effects from the US and the Mayo Clinic. I am slowly regaining my saliva after just over 30 sessions and going for 50. In all this survival band "beating" cancer or it going into remission and rejoicing where does quality of life come in. To me it isn't just not dying that counts but what is your QUALITY of life after surviving it. Any thoughts.

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.

Hello Johnny1985,

Semper Fidelis Army guy…USMC guy here.

MD Anderson in Houston TX is likely the worlds best CCC, especially for oral.

I know TX is a huge state, but put it this way, if my cancer was ever some rare or exotic thing, I’d be seeing about medical travel to TX to get treatment there.

That makes sense of your VA records notes being how they “half notified” you.

I was not able to get worked up through the VA as I am not 100%, and don’t qualify for dental, but I believe my VA dermatologist could have referred me out to a non-VA oral surgeon and through the “community care” or whatever it’s called program had it covered via the VA.

It’s possible, just trickier.

You may want to reach out to a CCC and ask them if they have a VA liason or are familiar with using the community care and trying to figure that out.

The VA can be great, I was able to see the UC San Diego Chief of Neurosurgery at the VA in La Jolla CA a decade ago, and that was in the normal VA appointment process. He was just my neurosurgery consult right there in the VA Hospital. I was amazed!

UCSD San Diego and VA San Diego share a medical campus there in La Jolla.


Since then my primary care doctor in the VA seems to change annually…but I have had the same dermatologist for the past 6 years.

It’s funny as the first biopsies my VA dermatologist did ended up being sent to my states flagship teaching hospital pathology as the VA did not at that time have a regional pathologist on staff. That ended up being the same CCC and pathology department that would diagnose my tongue cancer later through the civilian system.

Although this CCC did not have an oral pathologist (another reason I moved to the nearer CCC) either, and I had actually asked about having my biopsies sent to the oral pathology lab my first oral surgeon had insisted on using. They could have sent it for a second opinion AFTER their in house CCC pathology department had issued their report.

But it came back cancer, and I felt an error towards over-diagnosis was unlikely and better then an under-diagnosis and missing an early opportunity for early treatment as it’d get me into treatment as an established cancer patient early.

Since then though I believe all my post cancer diagnoses pathologist have not been oral pathologist, although my current CCC has oral pathologist on staff, and actually has the lady who is one of the chief oral pathologists of the first oral pathology lab, literally authored one of the top oral pathology textbooks, and signed my initial oral pathology report when it was potentially pre-cancerous dysplasia:

My current CCC ENT Surgeon knows her well and teaches with her and works with her, but had 100% confidence in the regular pathologist (BOTH of them CCC pathologists) getting my case right, and he is a DMD/MD who started in Dentistry to Oral Surgery to ENT to Oncology ENT sub-specialization.

So it’s funny it has only been my first biopsy that went to oral pathology, at least in terms of who signed the pathology report, and for the later biopsies there are no notes indicating consultation with an oral pathologist.

I believe my CCC has it streamlined were their regular pathologist makes the call for clear cut cases, and then if something is iffy they consult with oral pathologist, but still all in house in the same lab system. I was a bit surprised they did it that way.



This past year my skin (not tongue) biopsies were sent to a VA pathologist as they recently hired a regional pathologist.

So now the situation is a bit more understandable to me.

All of my oral surgery stuff was worked up outside the VA.

I probably could, now with a cancer diagnosis, get treated someway via the VA but we have good regiular insurance too.

I do remember that my first oral surgery consult was a wierd tricky dance just between medical and dental insurance.

Once the biopsy was done it kicked over to the medical insurance, but getting to the oral surgeon initially was …odd.

So the VA system adds another layer of complexity.

But I think they have greatly improved the programs allowing you access to care outside the VA, especially for complex issues.

A veteran service agency may be able to help you figure out how to go about using those benefits and arranging transportation and such.

Good luck, best wishes, keep the faith and please keep us up to speed on how things work out for you.

Sincerely,

Chris

Thanks for the reply and thanks for the kind words. I’m a fully disabled army veteran. I get a large majority of my hospital care through the VA Hospital Shreveport Louisiana, I live in a small town in north Texas. The way I found out about the referral from the in house pathologist to the oral pathologist specialist, was I got a notification on my medical records. I opened the email and read the notes. The record only stated consultation to oral pathologist and suspected cancer please expedite. Final report to follow after consultation. My initial dentist really didn’t think it was anything serious it took months for him to send me to an oral surgeon. Now I’m feeling like it should have happened sooner. I will look up the ccc, and maybe get a second opinion if the biopsy ever comes back. Thanks again for the reply!

Hello Johnny 1985,

Welcome to the forums, and sorry to hear you are experiencing a possible cancer scare.

My cancer diagnosis pathology report took almost 3 weeks, as I recall. I believe my biopsy was like Dec 15 and the doctor called me January 2nd.

That was done a Comprehensive Cancer Center (CCC) hospital, with in house pathology.

It seems a tad odd they would the say the pathologist was sending it to another "specialist" and then tell you it was because they suspected cancer. Sorry for that extra layer of anxiety.

Seems like if they wanted to hold of an a questionable diagnosis they would not bother telling you anything until it was definitive.

Here is hoping the "specialist" can say it is something besides cancer.

5 years before my cancer diagnosis, the oral surgeon who took my first ever biopsy, he was himself an oral cancer survivor, whom his regular dentist found his jaw cancer on a regular dental X-Ray for regular periodic dental maintenance.

Anyway that Oral Surgeon, who had his own stand alone medical practice, was insistent that my biopsy tissue sample be sent to a very specific oral pathology center, he didn't care if my insurance would pay or not, it was this one or nothing. (Apparently he had bad experiences with other pathology labs, and new this other one from his personal cancer experience and his professional practice experience.)

I was like, sure Doc, whatever you say, we have a few extra nickels to rub together, and it wasn't going to be massively expensive even in worse case scenario if we had to pay it all out of pocket. (Our insurance ended up covering it just fine).

He did not think the small white lesion was anything to be concerned about, but did it as it had not healed in a few months and had already been past the standard 2-3 weeks, if it doesn't heal biopsy it rule of thumb.

This highly regarded pathology lab, sent the report back and it said the tissue contained moderate epithelial dysplasia, with a whole bunch of diagnostic descriptions and justifications.

That 1st oral surgeon then sent me out to another oral surgeon who specialized in cancer and pre-cancerous conditions.

If you are in the US, I would start researching your nearest Comprehensive Cancer Center (CCC) and maybe even call their patient coordinators now (assuming you are not currently being treated at a CCC if they are sending the pathology out for a second opinion...) and tell them what is going on to kind of grease the skids a little in preparation for the biopsy report, which if they are saying maybe is cancer, and are doing an in house 2nd opinion, you may want your own 3rd opinion even if "the specialist" says it is NOT cancer.

If it is something that is potentially pre-cancerous, I'd still see if a CCC could get you set up as an established patient.

The CCC that found my cancer is a fine institution, and the best one in my state, but there is a closer one to me in our neighboring state, that has a much stronger oral cancer program, more depth of field, and access to truly world class technology, expertise, research, and treatments.

My CCC Oral surgeon who did the 2nd biopsy that found the cancer, when he called me to tell me the lesion, that he also did not suspect was anything to be worried about, was actually cancer, he was very gracious and happy to refer me out to this other Hospital system. He was going to have me do a consult with his in house ENT Oncology Surgeon to get wider margins around the tumor scar and scope my throat and all that, and I said if it was all right, I had already in my mind decided if that I ever received an actual oral cancer diagnosis I'd seek treatment at this other place.

Thankfully I was able to meet with the new hospitals Oncology ENT surgeon I think within 48 hours of that phone call.

One of the first things he did was send for the pathology cassettes (slides or whatever they are called, the fixed specimens...) so that THEIR in house pathology could lay eyes on the tissue and see for themselves what they thought before scheduling me for general surgery for a (very) partial glossectomy.

The tissue was sent to this other CCC's pathology lab, and they concurred with the micro-invasive squamous cell carcinoma diagnosis. I think I had to wait like 45 days for the surgery to be scheduled. That was a LONNNNNNG 45 days.

Sorry the waiting sucks, the not knowing sucks, but as many of the OCF veterans around here will remind us "It's not cancer until it's cancer", and while they rattled your nerves telling you they are sending it to someone else because they think it likely is, they still have not given you the definitive diagnosis yet.

Again, if I were you, I'd be like if this is such a photo finish pathology call, let's get a CCC pathologist and CCC Oral Surgeon or ENT Surgeon for a second opinion, and to follow you closely if it's something other than a totally benign condition.

The CCC may even decide to order imagery or to do another type of biopsy in order to make a diagnosis.

I hope that helps, and that those options are available to you and are convenient enough to make happen.

Best wishes,

Sincerely,

Chris

My dentist has been monitoring a growth in my right jaw for months. He first told me to change my toothpaste and mouthwash, then prescribed medicated mouth wash, then steroids which I had to stop taking because I have diabetes and it was spiking my sugar. Three weeks ago I had two punch biopsy’s taken out of my right lower jaw. After the first week I got an update saying the pathologist is sending my biopsy to a specialist for suspected cancer. I’ve been waiting… today the doctor called and canceled our an appointment and scheduled it for another two weeks out saying that the results are not ready and won’t be. I’m freaking out and wonder if anyone else had to wait this long for results?

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

Howdy All,

TLDR is just the next line...

I was wondering if anyone has had their foliate papillae removed in a biopsy?

------------------------------------------------------------------

Background larger narrative:

My situation is that I've noted that my foliate papillae on the right side of my tongue have tended to be more red and slightly enlarged, really throughout the 4 years between the dysplastic luekoplakia was biopsied and when my 2nd biopsy found Oral Squamous Cell Carcinoma (OSCC).

If I recall what my 2nd oral surgeon said on my first and second visit with him several years ago, is that they can do that through allergies and immune responses. That the redness and slight prominence I was seeing was exactly what he'd expect to see on a healthy tongue. He mentioned that if they were bothering me there was an antihistamine allergy medication was found to be effective in treating them in they were bothersome. They didn't hurt, and I only brought it up as a concern to be sure there was nothing cancer generating or relating going on there. They did seem to ebb and flow over the many months. Never sore, just sometimes when I'd look at my tongue to keep an eye on things they'd appear more red and prominent, and then other times they'd be less red and match the left side of the tongue.

I believe my ENT oncology surgeon that I am seeing now for regular follow up following the very partial glossectomy for the OSCC agreed with what this other oral surgeon (an oncology specializing one) had said regarding irritation, allergy, immune response, and normal cycle of things.

The foliate papillae were about a centimeter from the OSCC pimple like lesion, but not removed during the partial glossectomy. The scar of the expanded margin excision is now about 3-5 mm below the foliate papillae. No further cancer was found during the partial glossectomy, just more dysplasia, and dysplasia extending to the margins of the excision, if I recall correctly.

Since the excision scar has healed over with a typical white scar (as I understand it from the ENT surgeon), a few splotches of white lesions have arisen above and below the excision scar. They are painless and have no feelable (palpable?) difference in texture to the surrounding tongue tissue, although one has a very slight thickened feeling, but nothing I'd be able to detect if I wasn't really looking for it.

There is a new (since partial glossectomy) white patch, about like a fingernail clipping, long and thing that kind of extends from the scar to the foliate papillae, which seem to now have been in a perpetual red, slightly more prominent state since the partial glossectomy.

I've been mentioning this to the ENT Oncology surgeon during every checkup every few months. He is willing to biopsy anything I am worried about, but he does not feel it is indicated at this point from his opinion on how it looks and feels.

He explained that the surgery was not a gentle process on the tongue, scar tissue formation, suture healing and wound closure and all that pulls the tongue into a new shape. Some of the occasional fleeting cramping minor pain sensation I get is likely just that, scar tissue, tongue getting pulled in new ways. Same is true for the foliate papillae staying red, that region was obviously abused during the surgery process, tissue trauma is a necessary aspect of carving chunks of flesh out, and the body responds. I get that, and it makes sense.

I am very happy with my tongue as it is now, and I don't know if that area of the foliate papillae is like a danger zone for surgery (I'll try to remember what ENT surgeon says this time) with a higher risk of messing up taste functions, or difficult healing due to the molar teeth edges rubbing more on that part of the tongue than the part that was removed before further down.

But it has been a year and four months now.

I am not sure if its expected for the foliate papillae to be perpetually red and what that white line extending from the scar is about.

Initially some of it I thought was from where the sutures were. I think the one bump and tiny white pimple spot was one that I have pictures of being a spot where a suture was. I need to remember to ask the doctor about that, is it normal for a suture hole site to scar over and leave a prominence this long after surgery. It's not getting bigger at this point or changing any more, so not overly concerned about it, but we are keeping a close eye on all the lesions. (I see him here in a couple weeks again and am organizing my thoughts a bit stream of conscious blogging...sorry).

There is another white lesion, probably pencil eraser (the one on the end of a pencil) sized, below the scar and towards the back of it. That one on some days I can just barely feel it. The surgeon cannot with his gloved finger, and explained, interestingly to me anyway, that the way our brains work, often we can feel things on ourselves that even a skilled surgeon cannot. So he wasn't discounting that I could feel something, just it wasn't prominent enough for him to detect it. Again he's happy to biopsy anything that is concerning to me, just he is of the opinion it isn't anything he'd insist be done, falling into the gray area of reasonable to be done, but nothing setting of alarms in his professional opinion.

Finally just forward of the partial glossectomy scar on the tongue there is an area of tissue that is just more sensitive. It has never been biopsied. It does the whole capillary bleaching thing, that the oral surgeon who did the cancer finding biopsy explained to me on previous visits that the white area I was noticing really only "popped" when I stretched my tongue out to it's limits (by just sticking my tongue out, not yanking on it with my hand or anything, but I've done a lot of tongue sticking out excercise over the years so I can see the area and take pictures). That area, originally just a faint white, did become much more obvious with the tongue stretched out to its maximum, so I agree with the oral surgeons observation there.

He said when I relaxed my tongue it mostly disappeared, which was different than all my other leukoplakia lesions.

His explanation makes total sense, except for the question why just that one region of tongue tissue experienced capillary bleaching, that was something that was never explained to my satisfaction, but it was not a smoking gun for another biopsy.

I think it was about a year later the pimple lesion erupted from an area between that white capillary bleaching area, which was adjacent to the scar from my initial biopsy 3-4 years prior, and the biopsy scar which found the previous moderate epithelial dysplasia. The pimple like lesion eruption from the spot just posterior to that blanching area was biopsied and came back OSCC.

So now the area of the tongue forward of the partial glossectomy scar, has intermittent and varying intensity, similar white patchy coloration, not like the other permanenlty white spots and splotches I have/had, and seems like the skin there is super sensitive to touch, and feels kind of like a blister that has 90% healed, where it doesn't quite hurt, but it is super sensitive to friction and is uncomfortable if you rub it, where as any other part of my tongue I can rub vigoursly with no discomfort whatsoever.

I've also discussed this area of concern regularly with the doctor.

Trying to be vigilantly and at the same time not brutalize the tongue needlessly; potentially irritating “sleeping” dysplastic tissue.

I guess I’ll post this war and peace blog like update as is.

Any thoughts on those who may have been in similar situations are appreciated.

Thank you,

Chris

Age 46, Male

More than seven months ago I had two or three painful canker sores -- seemingly caused by cheap coffee. I get them sometimes, on my tongue or in my mouth, and of course they always disappear. The one that didn't disappear is on my right retromolar pad, at the exact center of where the mandibles always mash together. (And it seems to get grazed by those two very back teeth.) The sore was throbbing and painful for a good week or so, and I figured that was because of its location, always being rubbed on when chewing or just keeping my mouth shut. I also have bruxism/TMJ issues on that side and have for many years.

After about a week the ulcer stopped hurting and did shrink...but even after seven months hasn't vanished, though I know there was healing. The part where the ulcer stops hurting and changes for the better happened on schedule, but then that stopped. For several months it's just been a shriveled tiny white flapping-bump version of how it began. Its crater seems mostly "filled." I can move it around, and it will hurt a little if I press on it -- but otherwise it's not noticeable. If I left it alone and never touched it, it may shrink further but I wonder if it's mostly just scarring or a traumatic ulcer that can't ever vanish because of the frictional area where it is. It's always being impacted when I eat or have my mouth closed, after all. And I didn't measure the thing when it was new and open and throbbing, but I'd say it's now about the size of a very tiny Nerds candy, at the most. Certainly smaller, just still there.

I actually had three dentist visits for something else, several weeks after it first began to heal, and the visits included X-rays. I didn't mention it because I still just figured back then that it was slow to vanish. She must have seen it but didn't mention it either. But that was five months ago and I didn't think any of it would still be there. I have no other symptoms or indications of a problem. But when something like this sticks around and you Google it, you basically get a cancer diagnosis. Of course I can see my dentist again and ask, but before getting in I wondered if the folks here had any thoughts.