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

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.

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

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.