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.

Had a 6-month follow up visit with the oral surgeon on May 19 2020 who did the biopsy on my tongue last November (2019), with the pathology report coming back as Moderate Epithelial Dysplasia (full text below in original post). The lesion is now slightly larger, beyond the scar tissue of the biopsy sight, and more visible. Before I could see a difference in tissue texture adjacent to the while lesion, now there is more white colored streaking.

The original oral surgeon who did the biopsy is now referring me out to Oral and maxillofacial surgeon in Boston who specializes in Head and neck oncology for his evaluation. He noted in the referral letter that the dysplasia noted on the biopsy pathology report extended to the edges of the excision. He also noted that white lesion expansion.

With the whole COVID-19 thing going on (bless any cancer patients and caregivers dealing with the rigors of cancer treatment and recovery amidst the additional threat of that...) I was advised to wait until later in the summer to try to schedule the consultation appointment. Things kind of died down (before this latest resurgence) but Boston is starting to open things up a bit, so called and got registered with as a new patient today. I was unsuccessful in getting an appointment today, their "coordinator" (referred patient coordinator?) was given a message to call me to schedule appointment.

That was new and odd to me. Hate it when staff use terms of art and titles and don't explain what exactly this person does--every other appointment you call the doctors office, send them an email for the referral letter or whatever, and make an appointment.

The size of the lesion does seem to be larger, more white areas, and the round area with the unusually (doesn't match) texture is larger. Nothing huge, but slow growth. I've been taking iPhone pictures every month or so.

Not sure how backlogged this doctors appointments might be.

Curious to see if he will recommend additional biopsy of a larger region (in case as I mentioned in my original post--with the dysplastic tissue extending to the margins, if the source area of the dysplasia might be deeper or above/below left/right of the biopsy sight with perhaps more severe cellular atypia/dysplasia.

Also curious what he will thing about the toluidine blue dye to stain the lesion to highlight the tissue that isn't white, but different textured--to see if that area takes up the dye and if he will take a larger biopsy out.

The oral surgeon mentioned this new doctor may recommend laser ablation.

Who knows.

Literature review indicates moderate epithelial dysplasias have about a 10% chance of progressing to SCC. I'd imagine once all the atypical tissue has been removed then that 10% chance would go down to the baseline risk of any average person developing oral cancer.

I need to remember to ask him about the HPV virus. I've read that is big with throat cancer, not sure if it lines up with tongue lesions.

They did not test me for HPV.

Swallowing hasn't gotten worse--once in a while (few times a week) it feels like food is sticking in my throat more, and harder to swallow. Haven't gagged on any pills in a long while though.

Sorry no real questions with this post--no one really offered any thoughts on my last one. Kind of a note to myself to try and organize my thoughts for following up and getting this next level referral appointment scheduled to go in and be prepared to ask the doctor intelligent questions and make semi-informed decisions.

Not looking forward to another tongue incision, but would rather keep them coming as outpatient procedures with a few stitches then dealing with what some folks have to with invasive cancers (trying to catch anything nice and early....).

Not "worried" (don't lose sleep over it, don't think about it very often), but also trying to remain dilligent.

I'll update with what this other doctor says, and how things go from here on.

No pain or swelling or ulceration near the biopsy scar or extended white lesion.

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.

So I saw the second oral surgeon specialist at Boston Medical Center today that my original oral surgeon who performed the initial biopsy referred me to for follow up consultation.

He doesn't think a repeat biopsy is called for at this time. He reiterated what I had read online that moderate epithelial dysplasia has about a 1 in 10 chance (10%) of progressing to squamous cell carcinoma.

I asked about the clear margin "goal" and he said there isn't really a way to do that without very complex real time pathology pretty much reserved for actual cancerous tumors. He said, sure getting all the abnormal tissue would be ideal, but you just can't tell where to cut as the cellular level abnormality is not discernible to the unaided eye.

He doesn't believe that toluidine blue provides any advantage to selecting what tissue to remove above what his experienced eye by itself can discern. He will use it on some occassions...

I asked the question about if the abnormal tissue extends to the margin of the biopsy site, it is possible that more severe dysplasia or perhaps even cancerous tissue might exist beyond the site chosen for biopsy. In his experience he said that where the lesion is most obviously visibly abnormal in its gross macroscopic appearance (to the naked eye), that tissue is nearly certainly going to contain as severe dysplastic cells as anywhere in that vicinity--so to him no concern, if those were cancerous cells, yes, of course they have to go back and urgently remove the cancerous tissue.

He also did not think HPV was something to be tested for in my case because of the location of the lesion (side of tongue, pretty far back), and its presentation to him.

He was willing to remove tissue, do a repeat biopsy, laser ablation or whatever to reassure me, but that he was not concerned at all at this time. He did not think any further intervention would gaurantee anything besides the pain and hassle of another biopsy. Removal or laser ablation not guaranteed to prevent it from recurring anyway, and not guaranteed to offer any decreased risk of cancer developing beyond the 10% ballpark figure.

So while he wasn't really concerned to do anything at this point, he also wants to follow up with me regularly and see him back in 6 months (and suggested that this might be a regular thing from now on...you don't want it to progress undetected...and he may change his mind later and suggest a biopsy again).

I asked if I should do that via my first oral surgeon, or my dentist, or him, and he was like "do you want someone monitoring this who removes thousands of cancerous lesions every year, or someone who sees a handful over their entire medical/dental career"....so I'll be going back to the guy who does the thousands of actual cancer procedures every year.

So it is not as if this situation is something where one would be well advised to just forget about it and not do regular follow ups--akin to seeing a dermatologist regularly once you have on concerning biopsy--they just keep closer tabs on the area of concern.

I reiterated my concern of not wanting to lose a larger portion of my tongue than I might have to, with the idea of catching it early (not just better survival, but better function and quality of life). That I wasn't worried about it turning into cancer, just trying to do the prudent thing and prevent unnecessary disease progression--if that were possible. He half joked about that he could remove a large chunk of the tongue to get rid of all the dysplasia, and he has done some rather radical (in his estimation) over-treatment to go along with patient wishes for the closest to possible zero risk (of cancer), that he advised against.

It is the old cost/benefit and risk analysis. Any procedure could give you nerve damage even from a simple injection.

So I am confident in his confidence, and his logic seems impeccable. If he was "on the fence" like 50/50 in his dilemma of intervention, I'd push him over the fence toward the side of being more cautious and doing more earlier. But he is like 95%/ 5% split on the dilemma of how to proceed--so just going along with whatever recommendations he has.

My lesions have been 100% asymptomatic...don't even notice them.

If they were causing me pain/irritation or something I'd ask him to go ahead and to the laser ablation (he mentioned about that being less painful), but he isn't entirely sold on that being an substantially effective treatment option anyway.

Here is hoping your follow up goes similarly.

I have a coworker whose wife is having a really rough go with her throat/neck cancer, metastasis to bone, and possibly lung involvement. He was saying how they have her signed up for a research study, and the one treatment for her specific type is showing great promise despite the grim news of metastasis.

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

Had my 2nd 6 month follow up with oral surgeon in Boston. He wasn't the surgeon who did the biopsy. He is moving out of the area, so he still wants me to follow up every 6 months with an oral surgeon who specializes in malignant lesions.

He did not think it was necessary to re-biopsy my tongue at this point. I guess there is scant evidence on if disturbing dysplastic lesions via surgical removal is actually preventative or not in terms of preventing malignancy.

So I've yet to set up a future appointment with this other oral surgeon at Dartmouth Hitchcock in NH.

The longer oval shaped lesion closer to the tip of my tongue from the original lesion (moderate dysplasia), yet adjacent to the biopsy scar, that was more of a round white lesion remains. Perhaps a bit longer. It isn't as white as the original lesion, but the texture of the tongue tissue there is a lot smoother than the rest of the side of my tongue. This other lesion was never biopsied.

I'd kinda like to get set up with a comprehensive cancer center, just in case, and to offer to be a guinea pig in terms of participating in any ongoing research in following patients with dysplastic lesions and developing whatever protocols for repeat biopsy or diagnostic monitoring kind of thing. E.g. I am Curious if researchers have ever put someone with dysplastic lesions in say a PET scan and see if the cellular metabolism of the lesion shows up there. The science of it all interests me.

At this point happy to just do the 6 month monitored visual check ups.

I do appreciate the tensions the doctors face when dealing with more invasive or extensive biopsies where greater risk of loss of function is balanced with uncertainty of whether even for severe dysplasia short of carcinoma in situ is of any benefit vs. missing something early when you can nip it in the bud.

At the same time knowing that they can't tell just by looking at a lesion, I kind of wonder what is the point for just showing up every 6 months. I guess there could be obvious features they look for (red spots he mentioned) or odd changes that would then trigger follow up biopsies.

I'll bounce this off my primary care team at the VA clinic.

Hope things worked out for Mrs. Karl and everyone else.

Dear Chris and Mrs Karl,
I realize this thread is almost three years old but I am hoping for a reply. I am facing a similar situation, having been diagnosed with moderate dysplasia of the tongue. I hope you are doing well now and would be very interested in hearing how you are and how things worked out for you. I am facing the decision of whether or not surgical removal should be done and am very scared and anxious about what the best course should be.

Wishing you all the best

I see my new oral surgeon at Dartmouth for the 1st time on July 14th 2022 for follow up as recommended by the doctor who moved from Boston to have an oral surgeon experienced in working with malignant and possibly premalignant lesions every year or so.

The Boston doctor said to of course call for immediate appointment if anything changes.


Nothing really has changed that I can tell. A ~centimeter long band of different textured tissue remains forward of the biopsy cite, with the scar still having some minor white’ish coloration arround it. It is odd that the oval shaped region of smoother textured tissue (doesn’t match the texture of the rest of ny tongue) shows up very obviously in some lighting and bathroom mirrors and times, and with other lighting it is much harder to see.

The last time I saw the Boston Dr. I am not sure he even noticed what I was trying to show him in the mirror…nothing too concerning he seemed to indicate if it was that difficult to perceive.

It does “blanch” differently under finger pressure too, much more than the surrounding tissue and does some times appear to be indented below the surface of the surrounding tissue.

It does butt right up to the scar from the biopsy.


I plan on asking this new Dr. about perhaps using the toluidine blue dye and other lighting techniques to see if that shows what
I can readily see lights up in those conditions and see he thinks further biopsy is suggested.

For a short while I had two red painful canker sores near the left tip of my tongue that seemed to take forever to heal and also had an indentation like appearance, but right about the two week time limit they thankfully fully healed and disappeared completely.

So really I just expect to probably see this new doctor once a year for follow up and sooner if I ever notice anything change.

Again the Boston Dr said in my case an estimated 10% or less chance that the lesion could develop malignancy, and not a lot of good data on whether removing all residual dysplastic tissue is warranted or if rather the tissue trauma of repeated biopsy/resection may actually induce tissue responses and irritations that may trigger more dysplasia. That is trying to remove all dysplasia may not matter and potentially could cause more harm than benefit, if I recall and understood and interpreted what he had said correctly, and I do think that was the gist of what he said.

The trigger point for last doctor seemed to be any gross (large) changes to the area that you could see with naked eye…then for sure he’d want to revisit further biopsy and surgical intervention.


Best wishes.

Thank you so much for your reply Chris. It has been so helpful to me to hear from someone else going through a similar situation. At first I couldn't understand why they wouldn't just remove all the dysplastic tissue as a preventative measure. But now, after some thought and research and hearing what you have been told, I think perhaps it would be best not to further disturb the already dysplastic tissue. It is making a lot of sense to me. I do not look forward to more biopsies, though. The last one was very painful and took a while to heal. I think we are in a very gray area where it is not clear, even to the medical community, what the best approach is. It has been a roller coaster of emotions for me, not really knowing what the best course of action would be. It really has helped to hear from you.

Again, thank you so much for your reply and the information. I am very grateful.
I hope you continue to do well and feel well.

All the best

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