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ChrisCQ Offline OP
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Hello,

I was wondering what people who have had several biopsies and leukoplakia lesions experienced regarding tongue sores.


My only biopsy was a painless white lesion that came back moderate epithelial dysplasia. Follow up the past 4 or 5 years annually; nothing really going on. I see a different texture; oral surgeon said probably just capillary bleaching as I stretch my tongue.

Anyway the change that has me seeing the oral surgeon more frequently recently is a spot, with a bit of a raised ridge is now slightly painful. Since late Spring 2023 it has been off and on sore. Sometimes just to touch, sometimes burning sensation on its own. No glaring lesion visble. Nothing “angry looking”.

It almost resolved but then kind of flared back up; so I contacted the oral surgeon and he saw me a few weeks back. He probed the area and it was tender. The next day the spot was outright sore from the prodding. Dentist could find no rub spots from my teeth and nothing changed with my teeth anyway to cause that.

We kind of decided to do a 3 month follow up. It seems to be getting gradually slightly more noticeable and consistent in the soreness aspect. The oral surgeon didn’t seem to concerned with the minor soreness/pain as a new symptom.

To me, the nagging minor pain as a new symptom is a bit of a red flag; and am leaning pretty strongly to having him remove the spot and biopsy it mid December at the next appointment. The doctor didn’t seem to think the soreness was anything to be concerned about and that he could not visualize much there to remove. He did rub an instrument back and forth over this ridge and that is what became much more sore. So there is a bit of a ridge, that is sore, just not an obvious visual lesion to excise.

Was minor pain in a tongue lesion something folks have experienced and did it end up being correlated with additional dysplastic biopsies?

Did anyone else have a similar issue with a sore area at the margins of a previos excision?

The dentist originally said ANY lesion that doesn’t go away ina few weeks, even if painless, biopsy it.

They did, the lesion was painless: it was moderate dysplasia.

Now there is no obvious visual lesion, but a bump that is sore.

Seems to me it should removed and biopsied as now there is a painfull spot that isn’t going away after two weeks…even if the oral surgeon has to kind of excise it “by Braille”.

Any thoughts; opinions; experiences; recommendations?

The Dr was willing to biopsy it last visit; which kind if caught me off guard; as I wasn’t expecting that and wasn’t really mentally prepared. The oral surgeon who did my other biopsy did an exam, and then a 2nd a few weeks later, then scheduled the excision procedure. So I had everything arranged (soft foods, popsicles bought etc…)


Thank you,

CQ


11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue
1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue
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Biopsy for sure, in my opinion. I lost a year to questionable diagnosis until one ENT specialist decided to do one. Now, I did have a swelling in my neck which was easier to biopsy and those results led to back of tongue HPV. I wish the three MDs before him had reasoned it out and done the biopsy. Hope you find some rest from the unknown.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
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Hi Chris

I also recommend a biopsy. Agree with the old rule of anything that doesn't improve/go away within 2-3 weeks should be evaluated to the fullest. You are months into this process. Please let us know how it comes out.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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ChrisCQ Offline OP
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I see my current oral surgeon Dec 14th for follow up. It’s at our states only medical school hospital, but they dont have oral pathology.

My 1st oral surgeon, who did the biopsy sent the tissue to an oral pathology lab, top notch place, with some top of field oral pathologists.

I asked whether my next specimen could be sent there too. Curent oral surgeon said it would have to go through the hospitals pathology department first and could be sent to the other oral lab for a second read.

I have some reservations about this. I know they will get the cancer/not cancer diagnosis correct. But would be interested to know if the old lab would now grade this severe dysplasia up from the moderate, and do such grading with the exact same criteria.

Would seem to be more concerning. It may just be leukoplakia with no dysplasia or mild, but if the oral pathologist said that I’d be a bit more comfortable vs. a general pathologist.

Apart from cost and insurance aspect (I’d happily pay a bit to get the original lab), I am wondering if the same immunohistochemical stains and process would be used and if the process done by this other lab may muddy the waters when the specimen gets sent to oral pathology lab.

If I am going to go get my tongue jabbed and sliced again I would appreciate the highest confidence level in getting best pathology assesment.

I am Probably beeing too choosy for a non-cancerous lesion follow up.

The first oral surgeon kind of planted the concept in my brain when he said years ago if he was going to do the biopsy it was going to go to this particular lab, he didn’t care if my insurance was accepted there or not (it was), but that’s the only place he had such confidence in.

I bounced these minor concerns off the first oral surgeon and asked him if he’d do this 2nd biopsy or recommend me doing it with current Dr bit use same lab for a 2nd read. He said I should just go with the new Dr (#3), he being a referal from the oral surgeon (#2) the 1st surgeon referred me to. #2 moved out of area. That is this isnt the direct referral follow up specialist, but a newer specialist. These other oral surgeons seeing more patients with neoplastic lesions and pre-neoplastic lesion follow up.

I plan on requesting he biopsy it Dec 14.

Last time he said he could have done it right then, so assuming he could do it Dec 14.

I was a little surprised as the first Dr had a whole scheduling and consent and what to expect for the days after etc.

That was for a full excision of entire lesion, at least what was visible to the eye. Biopsy report said dysplastic tissue extended to the margins of the specimen, so there was “more than meets the eye”.

Not sure if the “we could knock it out right now” comment was because it would be a more minor procedure like a punch biopsy and need less stitches or what. Perhaps he just does so many more of them he has it down pat in a very effecient no big deal manner.

I am thankful for the good expert doctors I have seen and dont want to come off ungrateful or judgy or whatever.

I would be surprised if the bump came back as not dysplastic at all being adjoining to the old scar, it being slightly raised and sporadically painful.

I’ll let everyone know what I find out.

Thank you everyone.

Hope those struggling through the actual cancer treatments and recovery find comfort and strength.


11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue
1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue
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ChrisCQ Offline OP
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Happy New Year Everyone!,

Well my oral surgeon went ahead and did the re-biopsy (well adjacent to the old area, 2nd biopsy, wasn't quite on the scar area of the old) on Dec 14, 2023.

It was actually a pleasant experience! He had the magic touch. I was anxious. I guess maybe he took a smaller sample and didn't go so deep or something. My first biopsy was very rough the first 20 seconds waiting on the lidocaine to kick in. Both were great doctors. Very slight pain, less than a bee sting this time. The first time I was smelling colors, and hearing tastes, until the lidocaine kicked in.

It did go to the hospitals general pathology lab.

Today he called me with the results:

A - Tongue, right lateral, excision:
- Focal microinvasive squamous cell carcinoma.

Focal and Micro-invasive are adjectives that seem quite in my favor.

Squamous Cell Carcinoma not so much.

So I am very grateful for this my States flagship teaching University Hospital in getting this initial diagnosis. They are NCI designated Comprehensive Cancer Center, but don't have in house oral pathology.

I had already decided in my mind after reading a bunch of peoples collective wisdom in these forums and advice and such that the second a malignancy was mentioned I'd go straight away to the nearest Comprehensive Cancer Center on the OCF's listing with a stronger oral cancer program (from what I gathered on here).

I am very thankful for the great quality care in general in New England, but this other one is near the top of the list worldwide.

Plus despite it being in the adjacent State to our South, it is closer to a one hour drive, than the two hour drive.

(Sorry I think I remember reading some guidelines about speaking generally not naming doctors and institutions, I have great respect for all of them so far, but seems like a good protocol not to insult folks or give offense)

I called this other CCC up this morning minutes after my oral surgeon gave me the report, and he was happy to refer me to whichever organization I was inclined to go with, and honestly drive time is big consideration too.

The new CCC team got my files and sent it to their case intake triage team and said I should hear back from them by the end of the day. Less than 2 hours later, maybe an hour (time was spinning with my head) they had called me back saying triage said to schedule me with the first available surgeon for consultation, and that was 48 hours later. So this Thursday my wife and I are going to meet this next doctor to find out what the biopsy report means.

It was very sparse on details, unlike my "Moderate Epithelial Dysplasia" Pathology report in another thread on here.

So I am thinking the new doctor on the cancer team will likely try to get the tissue re-assessed by oral pathology, and/or expand the biopsy and order more studies and such.

I am glad for the advise folks offered "BIOPSY IT" and the like, LOL. "Just do it" (again...) more or less.

I am also glad for the vigilance reading others stories on here has instilled in me and my doctors, and the original dentist who found this lesion 5 years ago. "Uh, oh what is this?" (and me talking despite my tongue being held in gauze, replying in mumbled puzzlement "what is what?!?!" (imagine that in "tongue tied speak").

That's all of my update for now. I'll update more when I find out more this Thursday 1/04/2024.


11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue
1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue
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Thanks for the update and so pleased to hear of the quick support and good options. Please keep us updated. Keep the faith!


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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ChrisCQ Offline OP
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Well my general anesthesia surgery-- for an expanded biopsy for the focal micro invasive oral squamous cell carcinoma and a throat scoping-- is scheduled for Feb 20 2024. The one patient portal has it listed as a planned partial glossectomy, although the surgeon didn't use that phrase I don't think. I guess it is "partial glossectomy" if you remove any portion of the tongue, or perhaps he is leaving the extent of the procedure open, depending on how things look.

I am all for removal of anything that looks suspicious.

Surgeon did say there should be no lasting loss of function for speech, appearance, or taste, based on the size and apparent location.

Not sure how much worse the recovery may be, but I'll be home that night if all goes as planned.

Didn't come across too many folks on here who found and treated lesions that were graded just above carcinoma in situ and just micro-invasive.

Dana Farber is reviewing pathology slides from the biopsy. Not clear if I'll hear their conclusions before the pre-operation phone consultation before the surgery or not.

Ok falling asleep from plowing the interstate for this last snow storm the past 3 days. Sorry for the poor grammar and sentence "logic". But that is what my process is looking like so far.

So that is the current plan.


11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue
1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue
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Chris

Thanks for the continued updates. Prayers for a simple procedure, complete removal, and quick recovery.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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Does this make me an actual cancer patient now?

I haven't changed my bio thing yet from the days of being just dysplasia, where it asks the Yes/No question if you are a cancer patient or survivor.

Maybe I'll wait for Dana Farber's pathology review to update it, on the long shot and say, "nah that's just inflammation and possibly in situ...; looks more like severe dysplasia"....

I updated my signature line thing with the pathology "thesis statement" of diagnosis but haven't changed that Yes/No answer yet.



Waiting the next 5 weeks for 2/20/2024 to roll around, feels like a lonnnggg time away to not know much. I do feel I am in superb hands and have full confidence they will do the absolute best.

Updated my All of Us Research account to include my electronic health records of Dana Farber and all the other health systems.

Would love to somehow contribute more (as in my tissue, imaging, immunohistopathology etc...) to research somehow, to help our medical folks figure ways of catching this early and developing better treatments and expanding our knowledge.

I don't know how it would be possible to ethically do it, do something like figure a way to graft the stage one tumor tissue on a lab grown tongue or something and see how rapidly it progresses or something like that. Dumb actual example but something along those lines.

I can't tell from the various patient portals if Dana Farber has received the pathology "cassettes" (slides, I don't know the one pathology report talks about cassettes--what exactly that is I am unsure (will Google that momentarily)) from Dartmouth. I'd imagine it would be at least a week for them to be reviewed upon receipt. I am also unsure if I'll be able to see the conclusion of Dana Farber's pathology review before. Curiosity is where I am at.

I guess I should just enjoy some of my favorite "chewier" foods these next 5 weeks and enjoy. Some nice tasty brisket BBQ and such.

How much of a wider excision I am in for, I am not sure of, or what the recovery process is likely to entail. Relatively minor in the larger scheme of things than what many have had to endure. I imagine the first week will be pretty rough, and 3 or 4 weeks later back to roughly normal.

A lot probably depends on how much he decides to take, if he finds anything else on the scope, if the pathology review of the old biopsy indicates something else etc...which is probably why we didn't talk much about the recovery.

I remember the surgeon said no long term disability in appearance, speech function or eating. The fact that he said I'd be home that evening indicates to me it is likely to be worse than the first biopsy, but nothing to keep in hospitalized overnight.

Rainy January day here in New Hamsphire...guess I'll play some video games and go to a movie with the Mrs. this afternoon.


11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue
1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue
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Chris

I was told to bulk up before my surgery but had a fairly invasive surgical plan and they estimated 2 weeks in the hospital. I was in the hospital for 8 days and lost about 15 pounds. I was on a feeding tube. I was also told to bulk up between surgery and radiation. Gained 5 back between surgery and rads. Lost another 15 in radiation. I am 5'-11" tall and before surgery was 167-170 so fairly lean. Came home around 155. Gained back into the 160 range before rads. Dropped to 145 lbs as my low at end of rads. Today, almost 4 years later, I hover between 157-159. That half of my tongue musta weighed about ten lbs! It was my loud side smile When i did get back onto food, a vitamix was really helpful. Much of my food was blended. I could do soft foods (scrambled eggs, pudding, jello, etc) but to get enough calories was a real challenge. So we blended all kinds of higher calorie stuff (protein shakes, avacados, etc).

Your procedure sounds much simpler if you are going home same day. Keep us updated.

Best, Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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