NEW LEUKOPLAKIA FORMED ABOUT A CENTIMETER BELOW PARTIAL GLOSSECTOMY SCAR WHERE THERE WAS A MICRO-INVASIVE OSCC

Well, I guess I'll post this here as a repost as a new thread with a separate question.

So I saw my ENT Oncology surgeon several weeks ago for a August follow up from my February VERY partial glossectomy. Was like my 3rd post surgery follow up check up.

Everything healed up very well. Zero pain or problems like a month or two after the surgery.

For the most part that continues to be the case now.

I get an occassional cramping like pain, very minor, in the area that's only really been a thing in the last month or a little more, with a slight increase in frequency.

I discussed that with the surgeon, and he explained the tongue had been through quite a lot, and scar tissue forms and changes and things get pulled tight etc.

To me it seemed a bit odd that this long after the surgery I am getting the cramping sensations.

Unlike the little pimple that turned out to be cancer, there is no currently persistent sore spot.

I have noticed, and discussed with surgeon a new leukoplakia, about 1 cm below the scar from the surgery.

It seemed to be too far from the main scar to be a suture scar, and he agreed that it is not likely to be that. It did not feel firm to him, in fact he could not feel any texture to this lesion at all. Which neither did my first moderately dysplastic lesion. The cancer pimple did protrude a bit.

I can see tiny white dots around the main scar that I think are likely where the sutures have been absorbed and tiny little areas of scar tissue, that would be similar in size to the sutures.

The new leukoplakia is about the same sub-centimeter or maybe pushing a centimeter as the first lesion way back. This one does seem to have some pitting or ulceration to it, especially when I manipulate the surrounding tissue. It's not sore or sensitive at this point.

The surgeon did say he could do an in office biopsy right there in the exam room when I come in for a bi-monthly check up, that I would not need my wife or anyone to come, as it would just be local anesthetic and a couple stitches.

I did not try to show him the dimpling effect it had when pressed, it kind of slipped my disorganized mind.

I think I know what Nels and some of you other active cancer veterans would say: "Just biopsy it".

I am leaning towards doing that next time, or at least more seriously discussing it with the Dr.

Obviously if it progresses, AT ALL, between now and October, I'll request he go ahead and remove it and sent it off to the the lab.

Unless he says if we start doing this, we'll be repeating the process every couple months as a new leukoplakia pops up.

So I guess my question is for folks who have had cancer and multiple leukoplakias, for NEW ones do you pretty much ALWAYS get them biopsied after the 2-3 week period of "if it doesn't heal; BIOPSY IT!"?

The original lesion was biopsied ONCE, and so long as no changes, I just saw an oral surgeon once a year.

It changed, got the little pimple like eruption that was SORE when manipulated, and stayed sore days after, so that change triggered the biopsy that found the cancer.

I guess that would be a prudent approach, every time a new one pops up, confirm it is not cancer, then just watch it (like a hawk).

Thanks in advance for any words of wisdom.

I'll go spelunking in the past forums and see if I can find anyone else experiencing new post surgery leukoplakias and how they dealt with them or what people said how they dealt with them.

So as an update for my October 2024 follow up with the Oncology ENT Surgeon who did my tiny, very partial glossectomy--he discussed it with me and does not think another biopsy is yet indicated with the new leukoplakia. It is not as pronounced a lesion as the original leukoplakia was what almost 5 years ago now that came back as moderately dysplastic. It also has no detectable palpable change in texture or firmness. It also is not sore. He was not concerned about it, apart from just keeping a very close eye on it, he will see it every 2 months, and if I notice any changes to immediately contact his office, and a more immediate appointment could be made.

Possible just Frictional keratosis from changes in the tongue as the scar heals and the shape and flexibillity of the tongue changes and swelling and all that subsides, yet the shape of it is a tiny bit different so new parts of tongue are rubbing against teeth, new scar tissue has formed etc was my understanding.

We discussed too what a previous oral surgeon (who was oncology focused) had said regarding chasing clear margins from all dyspastic tissue, as my original biopsy 5 years ago stated that the dysplastic tissue extended to the margins of biopsy tissue sample as it relates to the new white spots.

My biopsy that found the micro invasive cancer had very narrow margins, thus the partial glossectomy, which found no further cancer, and more dysplastic tissue only.

The previous surgeon had said that he'd be happy to remove as much tongue as I wanted, but that it was not indicated. Sure you need nice wide margins around actual cancerous tissue.

They excise the visibly apparent lesion, and the first surgeon did get the entire white oval. But beyond that white oval the tissue remained dysplastic.

He said the evidence was inconclusive on whether it was beneficial to keep removing tissue until no further dysplastic tissue is found. To a layman such as myself, it would be parallel to removing pre-cancerous polyps in the colon. It can't become cancer if it it "ain't there no more"-- kind of deal. But I guess with the tongue there is concern that additional surgeries and irritation to the tissue may be worse for generating cancer than just leaving some moderately dysplastic tissue, that normally has a 1 in 10 chance ('ish) of converting to cancer.

The concern is irritating something currently benign, and possibly would have remained so for life, and unintentionally keeping the inflammation thing going to the excised tissue for biopsy being an actual trigger to malignancy.

So it's not as simple as just keep going to you get all the dysplastic tissue out. Yes it would still seemingly be ideal to get rid of it all (unless you sacrifice more function of the tongue and may trigger unecessary side effects) in the first biopsy with nice fat margins. But it is not necessary to keep going back in to get clear margins for merely dysplastic tissue. "First, do no harm" kind of thing comes to mind.

This is all as I understand it, and I think there are some clinicians who are on a different persuasion or school of thought, or see the evidence differently, but it's not a clear cut issue.

My current ENT Oncology surgeon said that he pretty much agreed with what I remember the former doctor having said as I stated it roughly.

So I did not press the issue or ask that he just go ahead and do it.

This is one of those tough call areas, and why I could never be a doctor and advise people on these uncertain things! I can barely decide what I'd prefer for myself, yet deal with the pressure of trying to advise people with the unknowns of how the disease actually progresses in full etc...

I trust this surgeon, and keep telling myself we are all human, I could insist on biopsy, but its my call, he is merely stating it isn't warranted AT THIS POINT. He is comfortable, as vigilant as I am, taking pictures and paying close attention to everything, and him seeing me every two months, that a guarded, watchful waiting is very reasonable, and he still feels comfortably positioned to aggressively and rapidly respond if anything changes. If that lesion or another chunk of tissue later becomes cancerous, it's not the surgeons fault or my fault, but a balanced approach to the pro's/con's as we see them.

If the lesion was more pronounced, visually, and palpable, gave pain or redness or anything else odd, that'd tip the scales more towards additional biopsy.

Sorry for the disjointed thoughts and train of logic--this is the first medial issue for me that I'd consider serious.

Oh back to the not clear margins from dysplastic tissue 5 years back, and not getting that all then. It's not at all clear that even doing that would have prevented the micro invasive SCC form arising. Whatever nascent dysplastic tissue was forming and whatever was causing that originally likely remained in my mouth environment, along the lines of the field cancerization phenomena, as I understand these things (which may be wrong).

This is where I wish I could volunteer my tongue tissue to research studying how this all works so they could know more clearly how to deal with remaining dysplastic tissue, is their SIGNFICANT reduction in risk, or even slight elevation in risk.

Better imagery that can detect minute amounts of cancer...etc...etc.. Shoot! That was the question I don't think I've asked him yet: w"ould the best PET/CT even be able to detect my previous tiny tumor?" I don't think sub-centimeter PET is viable at this point for the smallest of tumors.

So thats where I am at this point. Watchful waiting.

R/
CQ