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

Google imiquimod therapy and leukoplakia, it has great potential in healing leukoplakia and OSCC albeit as off label (experimental almost) medication.

One question though..did your first biopsy sample already had dysplasia cells?

Yes my 1st biopsy revealed moderate epthelial dysplasia

(you can search for my post on that and see the verbiage the pathologist used describing the dysplasia in detail or click my username and navigate to all my posts and see it).

2nd Biopsy revealed micro invasive oral squamous cell carcinoma and more moderate dysplasia. Margins not big.

Partial (very partial) glossectomy and 3rd biopsy of excised larger piece of tongue found no further cancer but more low grade dysplasia.

Well I did see my Cancer ENT Surgeon 11/19/2025 for my regularly scheduled interval follow up exams.

We did look at my PET/CT images, as I had concern about the right side of my neck showing some increased FDG uptake, and noted the pain I had between the corner of my jaw running down the right side of my neck to my collar bone. One of the lymph nodes on the PET/CT did look like it was kind of on that line beneath the collarbone.

Hopefully I did not shoot myself in the foot by saying perhaps my sense of pain is psycho-somatic (as I sit here typing this with probably a 2 or 3 right sided neck muscle pain, like when you've strained your neck, but no recollection of any traumatic, or repettive motion kind of thing, besides perhaps swiveling my head to check my mirrors driving commercial sized trucks and snow plows, but why a right side bias is unclear to me), as I was looking at the scans.

PET/CT shows several FDG avid right axillary lymph nodes with one SUV max of 5 point something, radiologist deemed of indterminate nature. Did a CT guided core needle and fine needle aspiration (FNA) biopsy that was on the first attempt non-diagnostic. Repeat needle biopsy was non-diagnostic on the the FNA, as it was again, almost entirely blood. The Core needle had actually lymph tissue with no evidence of cancer found, but a disclaimer that close clinical and radialogic correlation was crucial, as it may not be representative of the entire node.

The repeat needle biopsy at the time of this 11/19 appointment had already been ordered by the breast surgeon, but had not yet been done.

We have discussed the new leukoplakia for probably over a year now, and while I could feel nothing bump wise until about 6 months ago, and then it would come and go. My ENT surgeon, thus far, has been unable to feel the tiny bump I can now consistently find and feel.

He had previously offered an in clinic biopsy of the white lesion, but this time when I was asking him to examine this spot I am feeling, he could not feel it, and was kind of missing it, so he watched as I stuffed my finger in my mouth, and was kind of surprised how deep I was going, (kind of a LOL thing I guess). I don't think I gagged, but he was concerned about making me gag. He said where I was going was too deep to near the base of tongue to do an in clinic biopsy.

He said that he would need to do another general anesthesia direct laryngoscopy to biopsy that area (if I recall correctly, I was a tad shocked he was offering up another general anesthesia/minor surgical procedure as previously we had discussed just do quick local anesthesia in clinic excisional biopsy, nice and simple for him to do.

So I was kind of caught mentally off guard, but had several concerns I couldn't think to verbalize quick enough.

I did kind of get some of my concerns off my chest, about my actual cancerous lesion being nigh impossible for the oral surgeon to even tell what to biopsy, as it was so very subtle. In the end that oral surgeon could detect the bump with the wooden end of a cotton swab by rubbing it across the surface of the tongue. It was not much bigger than the size of that wooden cotton swab end, and it was actually cancer.

One of my concerns is that if my current ENT cancer surgeon can't feel what I am feeling how would he even know what to remove. Maybe it is that once I am on the table unconscious he'd be more able to deeply palpate all areas of the tongue without worrying about making me toss my cookies with a gag reflex. The white patchy area, as far as I can see, doesn't quite match the bump that feels deeper and further back. Still very very small. I can just consistently find it. It is tender upon palpating it. It does not remain sore after I irritate it by feeling it agressively like my original tongue lesion that happened to be cancerous EVENTUALLY did. It was after the oral surgeon tweaked it for a bit, and it remained sore consistently for a couple weeks, that I was determined to ask for it to be biopsied.

I'd hate to go through all that only for him to scope me and not find anything to biopsy. I don't think it was because he had a high suspicion of finding anything base of tongue on the laryngoscopy, as it was his response to me asking about the spot about 1cm below, and maybe to 1 cm further back. So he wasn't strongly encouraging me to schedule that, just that if I felt this new bump was growing or progressing that's how he'd want to do it.

I said as soon as you can feel where it is, then, for sure, I'd want you to biopsy it.

So I see him again 2/18/2026 and if anything develops or changes, call to make an earlier visit and schedule the general anesthesia procedure is the plan.

I did notice that area behind lower molars, near the corner of the jawbone, retromolar trigone, I guess, an area where he had noted some general white patchy leukoplakia more consistent with Wickham Striae (sp?), had glowed with a auto-phosphersence (no dyes or anything) kind of effect when I shined a black light on it. That is a change. A nurse called me back asking me to clarify, I though I did, but the notes she sent to the NP was that I was concerned with my teeth showing up on the black light. SMH.

The area of oral mucosa behind the molars, kind of like the insides of your cheeks but further back. I don't think that nurse was specific to the oral cancer office. I included the pictures.

Apparently that's not a concern.

So now as I sit here and my right side of my neck is sore, I've mentioned that briefly, but it is getting increasingly annoying, I'm on the fence of sending out YET ANOTHER patient gateway message to his team.

Striking the balance between early intervention while not crying wolf at every little thing, it is becoming an increasingly difficult balance.

I'll bite my tongue, as it were, for now, and wait to see if the neck pain begins to resolve. I can't find any bumps or lumps in my neck. Turning my head all the way left of right does aggravate it. Maybe just general old age and inflammation. If it continues to worsen or just does not go way after a couple weeks I'll send another message and see if it is concerning to him.

It's kind of crazy with micro-metastasis and micro-invasive small stage 1 tumors, anything sub-centimeter is not likely to show up on PET/CT. My original cancer likely would not have show up on a PET/CT.

Hopefully soon they'll advance PET/CT technology to be 10 or 100 times more sensitive/accurate for tiny tumors.

Thankful for what technology and medicine we do have, hopeful for continued advances.