At 28+ months post treatment, my husband had an appointment with a periodontist today regarding dental issues from radiation. But this guy also has the reputation for being very good at recognizing signs of cancer early on. Anyway, he ended up being concerned about a sore and a hard lump in my husband's tongue. Kind of threw me for a loop...I had finally gotten over worrying about every doctor's appointment. He wants my husband to get in to see his ENT surgeion as soon as possible.

But he did mention the hard lump in the tongue could be from radiation. Does anyone know if, at this period of time past radiation, fibrosis or scar tissue can still be present in the tongue? Can't get in to see the ENT for a couple of weeks (he is on vacation) - so would appreciate any similar experiences, etc.

Best,
Anita

Now I'm really getting concerned. Our ENT office just called - letting us know that the periodontist called them to say that he feels that my husband should be seen as soon as possible.

I looked at the "sore" on my husband's tongue - it is a small white bump.

Thanks, Anita

Hi Anita. I have no answers for you but will be thinking of you and your husband and hoping all is well.

Blessings,
Barb~

Anita, my fingers and toes are crossed for y'all and a special prayer for you both tonite. Amy

Anita
Like the above posters I don`t have any advice to give you, my hubby and I are a year or so behind you guys in our journey. But I will be thinking of you both and hoping this turns out to be much ado about nothing.
Marica

Anita,

Please remember that even suspicious looking things can sometimes turn out to be harmless. A few months ago I had a small white bump that appeared on my gum (and reminded me way too much of what my tumor had looked like years ago in its early stages). My oral surgeon examined it, ruled out several possibilities, and ended up doing a biopsy. The results came back saying it was a benign neuroma. My doctor said he has seen quite a few of these in other patients in different areas on the tongue (usually caused by some type of chronic irritation), but this was the first he had seen on the gum. I had a pretty good idea in my case what the source of the irritation was (an over-the-counter mouth guard I had been using at night), so I've stopped using it.

I hope your husband gets clear test results that can give him (and you) some peace of mind.

Cathy

Cathy,
this white spot is on the middle of the top of his tongue, so I don't think it is caused by irritation from rubbing. However, he did just start using prescription flouride toothpaste, which he says burns his mouth. I wonder if that would be enough of an irritant to cause a bump.

Hate that we have to wait until next Wednesday to have the ENT look at it (and the hard mass in the tongue) - he is on vacation until then.

Thanks,
Anita

Anita,

Just wondering if you kept the appt on Wednesday and what happened. Hope all is well and the ENT said it is nothing to worry about.

Rosie

Thanks for asking, Rosie.
Husband changed his appointment to next Wednesday because the doctor has office hours then at a hospital that is a closer distance. I would have preferred to find out what's up earlier...but I have to let him make his own decisions, I guess.

Thanks,
Anita

So, my husband has had his appointment with the ENT. ENT is taking a "wait-and-see" approach - which I'm not feeling all that comfortable with. He wants to see him in another month to see if the areas of concern have changed.

Anita

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