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

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 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

Good stuff, thanks for sharing. Overall, it sounds like you are on this early with a good team.

The waiting really sucks. I recall when I got my surgery date and it was a week earlier than we originally planned. Soon as I hung up the phone, I ran around the living room screaming "April first, lets's gooooooo! Cut this f@##in crap out of me! Let's goooooooo!" while I pounded my fist on my chest. My wife was staring at me from the couch wondering what the heck? This lasted a good 30-45 seconds before I could calm myself down and clarify everything for her. I tear up now just typing this and remembering how good it felt to have a date and plan.

Hang in there Chris. You got this!

Nels