Hello all.

At three and a half years post treatment, my husband has been having leukoplakia on his dorsal tongue. Started about 6 months ago and went away, now has come back. His periodontist urged him to get in to see his ENT and he had that appointment today. The ENT is taking a "watch and wait" approach, but did mention that he sees it quite a bit of this in radiated patients.

I have heard post radiation candida mentioned quite a bit here, but not leukoplakia. Am wondering if there are others that have had this problem. Note, my husband never had leukoplakia before his diagnosis and treatment (not that he is aware of, at least).

Thanks for any feedback,
Anita

Removal of persistant leukoplakia can be done with a laser without too much discomfort, and in some people this will resolve the issue... in others it comes back again. As to why, no one knows for sure. If you are not going to go this route, routine short time span exams I think are a must. Not all leukoplakias continue transformation into malignancies, but some do. An oral surgeon would be the doc to see if you want it lasered off. The laser takes off the top few layers of cells, and there is no real stiching, the wound caused by it heals by what they call " secondary intent," meaning it just developes new tissue on top all on it's own.

Thanks, Brian...
I did read about studies regarding removal and its unpredictable results when I searched the main body of this website. Thanks for providing such thorough reference material under that capability.

If I would have been with my husband during this latest check, I think I would have pressed for a biopsy - just to know what level of dysplasia is involved, etc.

But I am still curious about the ENT Surgeon's remark that he sees quite a bit of leukoplakia in patients that have had radiation. Just haven't seen that as a radiation or xerostomia after-effect anywhere.

Anita

There may be no actual dysplasia, and in a large white area, sometimes it is only a very small spot that may begin malignant transformation. The question would be where in a 2CM X2CM would you biopsy? Hence the desire to laser these off completely as they occur. I also have not heard about treatment caused leukoplakias.... but I am not a doctor.

I've had Leukoplakia on side of tongue since I had IMRT 4yrs. 4mos. ago. Recently I had them removed and biopsied, very relieved to hear"no sign of cancer". I would think that if you'd have it removed by laser you wouldn't get to hear
those beautiful words. The peace of mind was well worth the 3-4 wks of discomfort.

Good luck to all, Marlene

I just went for a checkup appt with my ENT and was told that I have leukoplakia on my tongue but "no signs of cancer or anything to worry about". He didn't say this was common in post-radiation patients but he didn't seem too concerned and he did suggest it was because of the radiation making my tongue very dry there and easily irritated. I have another appt. at the end of April and before then I will have an MRI and a PET to check for signs of cancer (I have pretty bad trismus right now and he couldn't get his fingers in my motuh well enough to feel the floor of the mouth, which would normally be a part of his exam, so these tests are extra important I guess).

He had actually mentioned at the last checkup that I had some white stuff on my tongue that was from irritation, not to be worried about but didn't say the word "leukoplakia". When he called it that this time, it worried me a bit. Does another checkup in 3.5 months seem like a close enough followup? Would I be able to have this removed by laser surgery even with restricted range of motion in my jaw? I am working hard with my therabite to improve the trismus a little but it's happening slowly.

It has been two years since my diagnosis by the way. But I think I'll wait to celebrate that two year mark until the appt. in April after all the other tests shows an all-clear. I guess r5ight now I'm superstitious that something bad will be found before then.

Nelie

Hi Nelie, I have had leukoplasia (sp?) several times since my original surgery.... my oral surgeon told me not to worry about it, he would keep an eye on it (I totally trust him) and it went away before my neck visit. At one point he was going to remove it in his office, I think because I was so worried about it...I still gets marks on my tongue from time to time and get them checked out. I am hoping all goes well for you!
Carol

Hi Nellie,
I suspect that each ENT has developed his/her own timing for post-treatment follow up. After radiation, my ENT wanted to see me every 6 weeks for the first year with CT scans every 3 months. Then every 8 weeks for the second year (CT scans every 6 months) and every 12 weeks the third.

If you're uncomfortable having to wait 3.5 months, see about moving the appointment forward. Waiting and uncertainty are anxiety producing and you shouldn't have to endure that if at all possible. Hoping that all goes well. - Sheldon

The ENT's are supposed to follow the schedules in the NCCN Oncology Practice Guidelines (especially if they wish to avoid liability).

I'm pretty sure my ENT is following that schedule. My concern is if, since I have leukoplakia, perhaps it is too much time in between appts.

Nelie

Nelie, don't know if this will help at all - but here's what has happened with my husband since I first started this post in September:

At that ENT visit, the doctor told him to come back in January - that was a departure from the every 6 months schedule he had been on. I ordered him some BetaCell mouth rinse, after reading about it on this forum. It actually seemed to improve the leukoplakia on his tongue and, even better, he hasn't had any mouth sores since he started using it. He had his January appointment - we were both pretty sure the ENT would biopsy the leukoplakia because it is still there. But he said it doesn't have any of the characteristics that would cause him concern, and he's not worried about it. ENT says everything looks good and has put him back on 6 month schedule.

Anita