Please keep us updated. My dad has the same type of CA-he has 12 more radiations and 1 chemo to go...I'm rooting for you guys.

Anita,

I don't get it. More than two weeks ago your husband's periodontist thought that his ENT should examine this spot as soon as possible. Now the ENT wants to watch it for another month? Did he say why he doesn't want to do a biopsy yet?

I know I posted earlier about my recent experience and how it turned out to be benign, but my oral surgeon was not willing to wait as long as your husband's ENT to investigate fairly aggressively, and my prior cancer was only Stage II.

Does your periodontist have any other recommendations about who should look at this?

Cathy

Anita,
I agree with Cathy. The periodontist and the ENT don't seem to be on the same page. Have you considered either a second opinion from another ENT or calling your periodontist back and asking whether or not he thinks this 'wait and see' strategy is appropriate?

Hoping this turns out to be nothing serious. Best, Sheldon

Thanks for the input. The ENT is saying that the white spot on the tongue could be from the flouride toothpaste or something. He said if was red "under it" he would be more concerned. The "mass" in the tongue is soft, not hard, they say - so they are not too worried about that either. They say that it is possible he bit his tongue there.

I'm really wishing I would have gone to the apppointment with my husband. i would have had a lot more questions.

My husband has an appointment with the same periodontist next week for a teeth cleaning - so maybe he'll take another look and weigh in.

Thanks,
Anita

Sorry for returning to this so much...but I'm just wondering some things. The official diagnosis of the small white patch on the tongue is leukoplakia. I'm wondering if the dry mouth from radiation combined with rather irritating flouride toothpaste could have something to do with it - I've done the search on leukoplakia and see that irritation can be a cause. Has anyone else had anything similar post radiation?

Thanks,
Anita

hi Anita,

i did a quick web search and one of the phoo's that i saw look like 2 white spots under my tounge i had about 4 months ago. my ENT was agressive and immediately cut them out and sent for biopsy - which came back negative. my tounge was fairly sore for a few days.

at the time, i probably was over using my flouride toothpaste. i've since reduced usage. i hadn't heard of the connection between leukoplakia and flouride. so it was interesting for me to read that link in your post.

i hope your husband heals and doesn't need further treatment.

cu,
larryb

Anita,

Leukoplakia is just a generic descriptive term for any white tissue in the mouth. Leukoplakia must be biopsied to find out specifically what it is: hyperplasia, dysplasia, cancer, fibroma, papilloma, etc. Leukoplakia can be benign, precancerous, or cancerous. The ENT said he would be more concerned if it was red underneath because a red patch, or an erythroplakia, is much more like to be precancercous or cancerous than a leukoplakia (white patch). That being said, no one, no physician or dentist, can tell you definitively that a leukoplakia or an erythroplakia is "nothing" with the naked eye. A biopsy is always requied to get a definitive answer. If you want a biopsy, insist on it.

I hope it turns out to be nothing.

Barb

I guess the ENT decided to take the "wait-and-see" approach based on the look of the patch and the location and...whatever else. Believe me, I have done the research on this to the max. Husband had the return visit to the periodontist two days ago - patch is still of some concern, but lump may be of more concern.

At this point, based on what I am reading, I am a little more concerned about the lateral tongue mass. But that could be from biting his tongue - I am starting to see that post-radiation tongues are a whole different ballgame. Previous rules may not apply. Don't know - just trying to deal with it all until time passes.

Thanks,
Anita

Just want to add that I know many on this site are dealing with much worse than us. My heart goes out to each and every one of you. We just had a visit with a couple that has been in this whole thing for awhile - we were trying to be a support to them (one of about 3 different patients that our ENT office has referred to us in the capacity of being a support.) Things have changed for them, as well. But I was good - I didn't once mention our current "area of concerns."

I don't know - I just keep thinking of a rather wonderful phrase recently posted: We each have our cross to bear, I'll just keep dragging mine along.

Anita, you are right that the tongue post radiation is much different. My tongue has an area on the side of it that is firm but not hard, and stays a little redder in color then the rest of my tongue. My doctor says it's damage from the radiation.
Hoping for the best.
Minnie