Lesion in front of old biopsy (right lateral lower tongue)site that I noticed but the oral surgeons couldn’t really see, now mildly painful. I contacted my oral surgeons office to schedule follow up visit due to the new sore feeling.

One of the staff members asked that I see my dentist before I get seen in 4 months. I guess I shouldn’t have said “rub?” in the text, was running out of characters to say felt like a rub sore, but I can’t make the sore find a rough tooth edge no matter how I try, so I don’t think it has anything to do with a sharp tooth edge.

Have definitely had canker sores that line up with a tooth point as a kid, tongue always seemed to find the ouch spot as a kid.
This isn’t like that at all.

The texture of this oval region that has a lighter pigmentation (again I can still barely see if under just the right lighting conditions, and find it really hard to capture on iPhone photos) has a definite rubbery texture—as I run my finger across it, it doesn’t slide smoothly like it does over the rest of my tongue, but kind of grabs and jumps, like a rubber squeegee effect.

This oval is slightly raised from surrounding tongue tissue, mostly can just feel it being ever so slightly raised with finger.

Sensitive now to touch, very mild pain. Does on occassion hurt by itself; sometimes a burning sensation, sometimes like a mild canker sore pain.

Has flared up a few times over past few months. Was doing the couple week healing time watching it first couple times
but finally decided I better mention it to Dr.


For those who have had multiple biopsies of white lesions leukoplakia or what have you, how often did they have a pain and still come back benign or moderate or mild displasia?


My original moderate displasia was utterly painless, complete surprise when the dentist even found it.


Even though I am now with a oral surgeon at a teaching hospital; I was wondering about the biopsy tissue being sent back to the same pathologist lab for comparison.

The oral surgeon who did the first biopsy, and was a oral/jaw cancer survivor himself, insisted the biopsy go to this one renown pathology center with a very highly regarded top of her field oral pathologist who did in fact do the analysis of the first biopsy.

Part of me wants her to see the new biopsy (assuming this is headed that way, as it has been dormant for so long and this being a new symptom), and going back to the first oral surgeon I ever saw.

But the new teaching hospital system my new Dr is in has their own pathology lab. I think Dartmouth does have CCC status; just just not as focused on oral SCC.

Any advice in that? I guess a board certified pathologist and pathology lab should be generally competent regardless; just not my personal preference ideal scenario.


I also wonder about being more insistent about the surgeon taking the whole oval lesion that I can see but they have been somewhat dismissive of or say they can’t really see anything there.


I cant really mark it with a Sharpie marker…but I feel something is going on here in that oval, and it isn’t just me being over-hyper-vigilant.

I previously wondered about the toluidine blue dye aiding in pre-biopsy visualization guide of biopsy margins, but the last couple of doctors indicated they don’t give that technique much credence any more.

I’d say if that oval stained blue and lit odd under blacklight/UV the doctor would see exaclty the spot I have been seeing.

I don’t know if it would show up. Maybe it interferes with the poathology stains too, that may be the bigger reason.

I just want to be aggressively proactive and vigilant to intervene early if that tissue decided to get more severely dysplastic or creep into a carcinoma in-situ state.

Not eager to biopsy the tongue again, but seemingly that’s gonna be the wisest route; that’s my prediction.

I’ll update if anything changes and once I’ve seen surgeon again.

If it gets different yet again I’ll ask to be seen sooner.

I’ll endeavor to be a good patient and schedule a dentist visit to rule out sharp tooth rub irritation situation ; nothing has changed to trigger that, so can’t see how that is possible; but will humor the oral surgery staff…

Best wishes to those fighting the good fight with worse news and diagnosis.

R/
CQ

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. (That'd be this thread, copied from my other thread about recurrance, but figured it fits this thread too, and being the OP figured it made sense).

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.

I have no idea how my brain invented the protocol about not mentioning the names of Dr.’s or medical institutions in this forum.

I must have confused it with somewhere else.

I see others talking about specific hospitals and such, but think I’ll just keep it vague as not essential. Just re-read some post and realized I must have invented a fake etiquette protocol in my head and didn’t want others to be confused.

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.