It takes time and everyone is different. For me, I could eat fairly normally most things after the first year. Saliva continued to slowly improve for several years. Biggest problem ongoing is food like rice getting stuck going down because of thickened mucosa. Good luck, keep fighting, and give it time! Also use a waterpic when able as the food tends to hang around in mouth due to lack of saliva….that will be life long.

After having problems with lower mandible and mitigating that fairly well for now, the next stage has begone….ear canal erosion. I have exposed bone that the ENT attributes to reduced blood flow post radiation. Doing conservative treatment, ie. keeping area dry, antibiotic drops weekly, and watching for now. My ENT was unfamiliar with Pento protocol and would not prescribe so I had Oral Surgeon prescribe it. 4 months in and so far erosion has stayed the same.

Anyone else have ear issues and will take any treatment recommendations…..

Two years in and plate is holding solid and bone graft has integrated well.

Laurie,

Thanks, sounds like we had a similar process.

On speech and eating, I noticed significant improvement between surgery and radiation. Then, radiation put me back a ways. After surgery, I noticed improvement nearly daily. But, after radiation, I learned I had to judge my improvement in weeks and months.

Over three years out and I am not back to normal speech or normal eating but I can eat most anything not too spicy and everyone can understand me. Alcohol tastes terrible except for a heavy stout beer which I save for special occasions. My biggest challenge is conversations while eating such as a meal out with friends or a party with food. I never realized before how often we all speak with food in our mouths at these types of settings. I am very hard to understand if I try to speak with some food in my mouth. I have noticed that foods still slowly improve. Suddenly, I will be able to eat something that 2-3 months earlier, I could not (too dry, too spicy, etc).

People would tell me my speech was improving but I didn't really notice probably because I was always hearing myself. So, I would tape myself reading something and go back and listen to it a month later. Then, the improvement was obvious to me. Maybe try that?

Keep us updated. Hope you have a wonderful Thanksgiving.

Best,
Nels

I had a hemiglossectomy, so half of tongue replaced with a skin graft

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.

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

Hi Laurie,

Glad to hear overall things are well. As James mentioned, this depends on many things. I am over 3 years post radiation and have notice my speech varies day to day and even morning to night. Some days it seems clearer than others. I think it depends on many things - what i ate, drank, tongue and swallowing exercises, hydration, etc. I still have to dig some food items out occasionally. If I am in public, i use a napkin to cover my mouth. I also find myself doing all kinds of weird jaw gyrations as i eat trying work stuff loose. I have also noticed my saliva production is not consistent and has an effect on my speech and ability to process some foods.

Also, what was involved in your surgery? I noticed a much bigger challenge with eating and speech after surgery but had half my tongue replaced.

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.

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

Seems like we were both going through the treatments at the same time. I am now 10 years out and felt led to check up on the site. We should be grateful every day that we survived and not take a moment for granted. Live life to the fullest my friend.

The best answer is, it depends. Treatment type and duration, severity of cancer etc. Give yourself some time and grace and do the best you can. The more liquid or puréed diet the better. The important focus is on the strengthening the ability to swallow. Keep protein amounts high. It is frustrating as those of us who gone through this can attest.