Hello,

Thankful that the biopsy of my tongue leukoplakia lesion came back non-cancerous.

Pathology report:

"MODERATE EPITHELIAL DYSPLASIA, EXTENDING TO THE TISSUE EDGES [K13.21]
PARAKERATOSIS AND CHRONIC INFLAMMATION


"The tongue mucosa is covered by a thin to moderate layer of parakeratin. The spinous layer exhibits moderate epithelial dysplasia characterized by dyskeratosis and focal dyscohesion and cells with increased nuclear: cytoplasmic ratio, involving up to two thirds of the thickness of the epithelium. Many apoptotic cells are noted and there is focal spongiosis and leukocyte exocytosis. Rete ridges are slightly bulbous and there is thickening of the basement membrane zone. A moderate lymphocytic infiltrate is present at the interface."

So my understanding is that dysplasia is a possibly pre-cancerous condition of cellular disorganization and intracellular changes, and that moderate oral epithelial dysplasia is currently understood to develop into cancer roughly 10% of the time, the tongue being a location where it is more apt to.

A couple questions come to mind that I wondered what various folks might advise.

The oral surgeon wants me to go back in 6 months to see what the biopsy region looks like and to decide to do another biopsy or whatever then. (Once I've tossed a few ideas around here and have thought about this more I'll follow up with my doctor via email, but wanted to kind of develop my thoughts to ask better questions kind of thing...). The Oral Surgeon did answer my question if anything changes at the biopsy site to contact his office to be seen sooner. He was surprised with the pathology report as he did not expect dysplasia at all for the small 4 mm round ulcer.

1.) So one issue is that the biopsied tissue has dysplasia extending all the way to the margins. Obviously if this was cancer they'd want to go back in right away and do something to address that. Seems to me that the ideal case would be to eradicate the dysplastic cells, so that there would no longer be dysplastic cell lines to develop. Wouldn't that be the ideal case, to remove all dysplastic cells? I've read some posts where after a small biopsy of a larger region of leukoplakia folks opt to have the larger visible leukoplakia region removed. But in my case the visible lesion was excised, but microscopically apparent dysplastic cells remained at the margin.

2.) I've observed other tiny dimples in the area around the ulcer, (pre and post biopsy) that are unique to that area, and white lines extending from the ulcer. The lines went away. The dimples remain. The texture of the tongue tissue in that general area seems different. The doctor did not use the Toluidine blue or any kind of other light device to examine my tongue/mouth and the physical exam was quite brief. No palpation of the tongue or base of mouth, but he did check neck lymph nodes. I mean he grabbed my tongue to yank it out to see the ulcer, but didn't really feel it. Part of me wonders if their is tissue outside of the visibly obvious portion he excised that may harbor worse dysplasia, either deeper in the tongue or around the perimeter of the excision. I've taken many pictures of it with iPhone--getting the phone to capture what the human eye can see close up is not easy. I was going to show the Dr. pictures of it and ask him on my iPad but kind of chickened out--not wanting to appear a total kook. They aren't as noticeable as the ulcer he cut out, but it is apparent to me there is more going on in that area.

3.) I did mention to the oral surgeon I was experiencing difficulty swallowing, had taken a few pills and one got stuck in the back of my throat (never happens to me, usually can swallow horse pills A-ok) and I kind of choked on it for a good 30 seconds (able to breath, but it was lodged in back of throat triggering gag reflex etc...). I kind of discounted it and suggested maybe it was just due to general throat inflammation, that I had tonsil stones on the right side of throat (same side as this tongue lesion, and same side of a lower right molar that had to be re-root canalled due to infection, several years later). He didn't ask any follow up questions on that. Since then the swallowing has not been a problem.

4.) Ongoing "dry throat" feeling. Way back in throat, almost like it feels like if you have a stuffy nose and breath through your mouth all night and the back of your mouth/throat is dried out from mouth-breathing dry winter air all night. It isn't painful, but feels kind of "scratchy". Swallowing in general feels like something is swollen still (could just be post-nasal drip/sinus/throat inflammation--but new normal for me now for some reason).


I am not keen on the idea of having a repeat tongue biopsy. Two weeks since my tongue is totally recovered pain wise, first 5 days were pretty rough. Unlike my dentist he did not use any topical anesthetic before putting the Novocain needle in...that really made me ready to confess state secrets...only a few seconds but boy did my eyes water. The squeezing of the tongue and yanking it hard out of my mouth to access the ulcer kind of distracted me enough from the sharp needle pain that I made it through. I think I'll ask about topical numbing before the needle next time. Maybe on the tongue the topical stuff doesn't do much. Works great on my gums when the dentist puts it on there before needling. Was a big old purple contusion at the injection site that lasted a good 5 days and was about as bad as the incision site.

I'll be keeping a close eye on the area, and will perhaps email the Dr. back with the pictures and ask him about the other area.

If he is going to re-biopsy the same location 6 months from now I'd almost rather he take a larger part of the tongue and get it over with, get rid of the dysplasia altogether (I gather from others' posts that even if biopsy says it's all removed it is apt to recur), but how do you ask the expert to consider using some kind of adjunct (Toluidine blue or whatever) to visualize less obvious parts of the tongue that appear altered to the laymen's eye?

10% is a small risk, but still I'd much rather them take a quarter sized chunk of out my tongue now than to deal with something like a partial glossectomy or worse down the road.

I am not really worried or bothered about it all, just trying to do what seems prudent and reduce risk as much as possible (having read what many others on this forum with actual cancer have had to endure--something to avoid if at all possible).

Sorry for the war and peace novel, but that is kind of what is rumbling through my mind.

Thankful to have a working tongue this Thanksgiving, and my wishes and prayers for all those unable to enjoy the normal use of their tongues due to surgery/radiation/chemo and not able to use their tongue to swallow normally.

I've come to really appreciate my tongue!

A penny for anyone's thoughts...thank you in advance.

Hi Chris,

I’ve had a similar experience as you. In November 2018, I had a leukoplakia removed and biopsied, and it came back as moderate dysplasia. The growth cane back and was excised and biopsied again in May 2020. This time it came back as severe dysplasia. Both times the dysplasia has extended to the margins, which concerns me. Especially since it appears to be growing back again already. I have another appointment in a few months, and I have yet to be referred to anyone other than the oral surgeon who biopsied both in the first place. I would be really interested to hear any updates on what your specialist tells you. After having two biopsies, and what I know will be a third when I go have this new growth checked out, I would really like to know what other treatment options there are in order to get clean margins for the dysplasia.

Hang in there. You’re not alone.

Hi chris and Awink1,

I am dealing with almost the exact Same path report as chris. Being treated at Farber and haVe second opinion on Oct 21 at Memorial Sloan Kettering in nyc and also NYU oral cancer program Oct 7 but trying to get both on same day so this may chance.

Damn thing on my tongue seems to be growing daily. I wish I could say I wasn’t anxious. Sent pics to Farber yesterday and they moved up my appointment to Oct 5th.

So worried because we didn’t have clear margins and any further excisions will cause “significant deformities.” Doc wants observation and possible laser to get tip of tongue.

So great to hear your thoughts on you doc visit chris. I thought my doc was not being urgent enough, I understand more now. Thank you very much for sharing.

Awink1, hope you are well and would like to hear how you are doing.

Sending good thoughts....

Mrs. Karl

Scared,

Been in your shoes and understand what you're feeling. My journey started with lichen planus about seven years ago. Lots of dysplasia and biopsies along the way. Five surgeries later I'm down to about a third of my native tongue. Hemi-glossectomy with flap replacement last spring and another surgery just last month. Fortunately I have not had to face radiation. All I can say is cut out any lifestyle risk factors, eat clean and try to stay positive. It's a rough road. PM me if yu want to chat more

Steve

Lesion in front of old biopsy (right lateral lower tongue)site that I noticed but the oral surgeons couldn’t really see, now mildly painful. I contacted my oral surgeons office to schedule follow up visit due to the new sore feeling.

One of the staff members asked that I see my dentist before I get seen in 4 months. I guess I shouldn’t have said “rub?” in the text, was running out of characters to say felt like a rub sore, but I can’t make the sore find a rough tooth edge no matter how I try, so I don’t think it has anything to do with a sharp tooth edge.

Have definitely had canker sores that line up with a tooth point as a kid, tongue always seemed to find the ouch spot as a kid.
This isn’t like that at all.

The texture of this oval region that has a lighter pigmentation (again I can still barely see if under just the right lighting conditions, and find it really hard to capture on iPhone photos) has a definite rubbery texture—as I run my finger across it, it doesn’t slide smoothly like it does over the rest of my tongue, but kind of grabs and jumps, like a rubber squeegee effect.

This oval is slightly raised from surrounding tongue tissue, mostly can just feel it being ever so slightly raised with finger.

Sensitive now to touch, very mild pain. Does on occassion hurt by itself; sometimes a burning sensation, sometimes like a mild canker sore pain.

Has flared up a few times over past few months. Was doing the couple week healing time watching it first couple times
but finally decided I better mention it to Dr.


For those who have had multiple biopsies of white lesions leukoplakia or what have you, how often did they have a pain and still come back benign or moderate or mild displasia?


My original moderate displasia was utterly painless, complete surprise when the dentist even found it.


Even though I am now with a oral surgeon at a teaching hospital; I was wondering about the biopsy tissue being sent back to the same pathologist lab for comparison.

The oral surgeon who did the first biopsy, and was a oral/jaw cancer survivor himself, insisted the biopsy go to this one renown pathology center with a very highly regarded top of her field oral pathologist who did in fact do the analysis of the first biopsy.

Part of me wants her to see the new biopsy (assuming this is headed that way, as it has been dormant for so long and this being a new symptom), and going back to the first oral surgeon I ever saw.

But the new teaching hospital system my new Dr is in has their own pathology lab. I think Dartmouth does have CCC status; just just not as focused on oral SCC.

Any advice in that? I guess a board certified pathologist and pathology lab should be generally competent regardless; just not my personal preference ideal scenario.


I also wonder about being more insistent about the surgeon taking the whole oval lesion that I can see but they have been somewhat dismissive of or say they can’t really see anything there.


I cant really mark it with a Sharpie marker…but I feel something is going on here in that oval, and it isn’t just me being over-hyper-vigilant.

I previously wondered about the toluidine blue dye aiding in pre-biopsy visualization guide of biopsy margins, but the last couple of doctors indicated they don’t give that technique much credence any more.

I’d say if that oval stained blue and lit odd under blacklight/UV the doctor would see exaclty the spot I have been seeing.

I don’t know if it would show up. Maybe it interferes with the poathology stains too, that may be the bigger reason.

I just want to be aggressively proactive and vigilant to intervene early if that tissue decided to get more severely dysplastic or creep into a carcinoma in-situ state.

Not eager to biopsy the tongue again, but seemingly that’s gonna be the wisest route; that’s my prediction.

I’ll update if anything changes and once I’ve seen surgeon again.

If it gets different yet again I’ll ask to be seen sooner.

I’ll endeavor to be a good patient and schedule a dentist visit to rule out sharp tooth rub irritation situation ; nothing has changed to trigger that, so can’t see how that is possible; but will humor the oral surgery staff…

Best wishes to those fighting the good fight with worse news and diagnosis.

R/
CQ