Hello,

I was wondering what people who have had several biopsies and leukoplakia lesions experienced regarding tongue sores.


My only biopsy was a painless white lesion that came back moderate epithelial dysplasia. Follow up the past 4 or 5 years annually; nothing really going on. I see a different texture; oral surgeon said probably just capillary bleaching as I stretch my tongue.

Anyway the change that has me seeing the oral surgeon more frequently recently is a spot, with a bit of a raised ridge is now slightly painful. Since late Spring 2023 it has been off and on sore. Sometimes just to touch, sometimes burning sensation on its own. No glaring lesion visble. Nothing “angry looking”.

It almost resolved but then kind of flared back up; so I contacted the oral surgeon and he saw me a few weeks back. He probed the area and it was tender. The next day the spot was outright sore from the prodding. Dentist could find no rub spots from my teeth and nothing changed with my teeth anyway to cause that.

We kind of decided to do a 3 month follow up. It seems to be getting gradually slightly more noticeable and consistent in the soreness aspect. The oral surgeon didn’t seem to concerned with the minor soreness/pain as a new symptom.

To me, the nagging minor pain as a new symptom is a bit of a red flag; and am leaning pretty strongly to having him remove the spot and biopsy it mid December at the next appointment. The doctor didn’t seem to think the soreness was anything to be concerned about and that he could not visualize much there to remove. He did rub an instrument back and forth over this ridge and that is what became much more sore. So there is a bit of a ridge, that is sore, just not an obvious visual lesion to excise.

Was minor pain in a tongue lesion something folks have experienced and did it end up being correlated with additional dysplastic biopsies?

Did anyone else have a similar issue with a sore area at the margins of a previos excision?

The dentist originally said ANY lesion that doesn’t go away ina few weeks, even if painless, biopsy it.

They did, the lesion was painless: it was moderate dysplasia.

Now there is no obvious visual lesion, but a bump that is sore.

Seems to me it should removed and biopsied as now there is a painfull spot that isn’t going away after two weeks…even if the oral surgeon has to kind of excise it “by Braille”.

Any thoughts; opinions; experiences; recommendations?

The Dr was willing to biopsy it last visit; which kind if caught me off guard; as I wasn’t expecting that and wasn’t really mentally prepared. The oral surgeon who did my other biopsy did an exam, and then a 2nd a few weeks later, then scheduled the excision procedure. So I had everything arranged (soft foods, popsicles bought etc…)


Thank you,

CQ

Biopsy for sure, in my opinion. I lost a year to questionable diagnosis until one ENT specialist decided to do one. Now, I did have a swelling in my neck which was easier to biopsy and those results led to back of tongue HPV. I wish the three MDs before him had reasoned it out and done the biopsy. Hope you find some rest from the unknown.

Hi Chris

I also recommend a biopsy. Agree with the old rule of anything that doesn't improve/go away within 2-3 weeks should be evaluated to the fullest. You are months into this process. Please let us know how it comes out.

Nels

I see my current oral surgeon Dec 14th for follow up. It’s at our states only medical school hospital, but they dont have oral pathology.

My 1st oral surgeon, who did the biopsy sent the tissue to an oral pathology lab, top notch place, with some top of field oral pathologists.

I asked whether my next specimen could be sent there too. Curent oral surgeon said it would have to go through the hospitals pathology department first and could be sent to the other oral lab for a second read.

I have some reservations about this. I know they will get the cancer/not cancer diagnosis correct. But would be interested to know if the old lab would now grade this severe dysplasia up from the moderate, and do such grading with the exact same criteria.

Would seem to be more concerning. It may just be leukoplakia with no dysplasia or mild, but if the oral pathologist said that I’d be a bit more comfortable vs. a general pathologist.

Apart from cost and insurance aspect (I’d happily pay a bit to get the original lab), I am wondering if the same immunohistochemical stains and process would be used and if the process done by this other lab may muddy the waters when the specimen gets sent to oral pathology lab.

If I am going to go get my tongue jabbed and sliced again I would appreciate the highest confidence level in getting best pathology assesment.

I am Probably beeing too choosy for a non-cancerous lesion follow up.

The first oral surgeon kind of planted the concept in my brain when he said years ago if he was going to do the biopsy it was going to go to this particular lab, he didn’t care if my insurance was accepted there or not (it was), but that’s the only place he had such confidence in.

I bounced these minor concerns off the first oral surgeon and asked him if he’d do this 2nd biopsy or recommend me doing it with current Dr bit use same lab for a 2nd read. He said I should just go with the new Dr (#3), he being a referal from the oral surgeon (#2) the 1st surgeon referred me to. #2 moved out of area. That is this isnt the direct referral follow up specialist, but a newer specialist. These other oral surgeons seeing more patients with neoplastic lesions and pre-neoplastic lesion follow up.

I plan on requesting he biopsy it Dec 14.

Last time he said he could have done it right then, so assuming he could do it Dec 14.

I was a little surprised as the first Dr had a whole scheduling and consent and what to expect for the days after etc.

That was for a full excision of entire lesion, at least what was visible to the eye. Biopsy report said dysplastic tissue extended to the margins of the specimen, so there was “more than meets the eye”.

Not sure if the “we could knock it out right now” comment was because it would be a more minor procedure like a punch biopsy and need less stitches or what. Perhaps he just does so many more of them he has it down pat in a very effecient no big deal manner.

I am thankful for the good expert doctors I have seen and dont want to come off ungrateful or judgy or whatever.

I would be surprised if the bump came back as not dysplastic at all being adjoining to the old scar, it being slightly raised and sporadically painful.

I’ll let everyone know what I find out.

Thank you everyone.

Hope those struggling through the actual cancer treatments and recovery find comfort and strength.

Happy New Year Everyone!,

Well my oral surgeon went ahead and did the re-biopsy (well adjacent to the old area, 2nd biopsy, wasn't quite on the scar area of the old) on Dec 14, 2023.

It was actually a pleasant experience! He had the magic touch. I was anxious. I guess maybe he took a smaller sample and didn't go so deep or something. My first biopsy was very rough the first 20 seconds waiting on the lidocaine to kick in. Both were great doctors. Very slight pain, less than a bee sting this time. The first time I was smelling colors, and hearing tastes, until the lidocaine kicked in.

It did go to the hospitals general pathology lab.

Today he called me with the results:

A - Tongue, right lateral, excision:
- Focal microinvasive squamous cell carcinoma.

Focal and Micro-invasive are adjectives that seem quite in my favor.

Squamous Cell Carcinoma not so much.

So I am very grateful for this my States flagship teaching University Hospital in getting this initial diagnosis. They are NCI designated Comprehensive Cancer Center, but don't have in house oral pathology.

I had already decided in my mind after reading a bunch of peoples collective wisdom in these forums and advice and such that the second a malignancy was mentioned I'd go straight away to the nearest Comprehensive Cancer Center on the OCF's listing with a stronger oral cancer program (from what I gathered on here).

I am very thankful for the great quality care in general in New England, but this other one is near the top of the list worldwide.

Plus despite it being in the adjacent State to our South, it is closer to a one hour drive, than the two hour drive.

(Sorry I think I remember reading some guidelines about speaking generally not naming doctors and institutions, I have great respect for all of them so far, but seems like a good protocol not to insult folks or give offense)

I called this other CCC up this morning minutes after my oral surgeon gave me the report, and he was happy to refer me to whichever organization I was inclined to go with, and honestly drive time is big consideration too.

The new CCC team got my files and sent it to their case intake triage team and said I should hear back from them by the end of the day. Less than 2 hours later, maybe an hour (time was spinning with my head) they had called me back saying triage said to schedule me with the first available surgeon for consultation, and that was 48 hours later. So this Thursday my wife and I are going to meet this next doctor to find out what the biopsy report means.

It was very sparse on details, unlike my "Moderate Epithelial Dysplasia" Pathology report in another thread on here.

So I am thinking the new doctor on the cancer team will likely try to get the tissue re-assessed by oral pathology, and/or expand the biopsy and order more studies and such.

I am glad for the advise folks offered "BIOPSY IT" and the like, LOL. "Just do it" (again...) more or less.

I am also glad for the vigilance reading others stories on here has instilled in me and my doctors, and the original dentist who found this lesion 5 years ago. "Uh, oh what is this?" (and me talking despite my tongue being held in gauze, replying in mumbled puzzlement "what is what?!?!" (imagine that in "tongue tied speak").

That's all of my update for now. I'll update more when I find out more this Thursday 1/04/2024.

Thanks for the update and so pleased to hear of the quick support and good options. Please keep us updated. Keep the faith!

Well my general anesthesia surgery-- for an expanded biopsy for the focal micro invasive oral squamous cell carcinoma and a throat scoping-- is scheduled for Feb 20 2024. The one patient portal has it listed as a planned partial glossectomy, although the surgeon didn't use that phrase I don't think. I guess it is "partial glossectomy" if you remove any portion of the tongue, or perhaps he is leaving the extent of the procedure open, depending on how things look.

I am all for removal of anything that looks suspicious.

Surgeon did say there should be no lasting loss of function for speech, appearance, or taste, based on the size and apparent location.

Not sure how much worse the recovery may be, but I'll be home that night if all goes as planned.

Didn't come across too many folks on here who found and treated lesions that were graded just above carcinoma in situ and just micro-invasive.

Dana Farber is reviewing pathology slides from the biopsy. Not clear if I'll hear their conclusions before the pre-operation phone consultation before the surgery or not.

Ok falling asleep from plowing the interstate for this last snow storm the past 3 days. Sorry for the poor grammar and sentence "logic". But that is what my process is looking like so far.

So that is the current plan.

Chris

Thanks for the continued updates. Prayers for a simple procedure, complete removal, and quick recovery.

Nels

Does this make me an actual cancer patient now?

I haven't changed my bio thing yet from the days of being just dysplasia, where it asks the Yes/No question if you are a cancer patient or survivor.

Maybe I'll wait for Dana Farber's pathology review to update it, on the long shot and say, "nah that's just inflammation and possibly in situ...; looks more like severe dysplasia"....

I updated my signature line thing with the pathology "thesis statement" of diagnosis but haven't changed that Yes/No answer yet.



Waiting the next 5 weeks for 2/20/2024 to roll around, feels like a lonnnggg time away to not know much. I do feel I am in superb hands and have full confidence they will do the absolute best.

Updated my All of Us Research account to include my electronic health records of Dana Farber and all the other health systems.

Would love to somehow contribute more (as in my tissue, imaging, immunohistopathology etc...) to research somehow, to help our medical folks figure ways of catching this early and developing better treatments and expanding our knowledge.

I don't know how it would be possible to ethically do it, do something like figure a way to graft the stage one tumor tissue on a lab grown tongue or something and see how rapidly it progresses or something like that. Dumb actual example but something along those lines.

I can't tell from the various patient portals if Dana Farber has received the pathology "cassettes" (slides, I don't know the one pathology report talks about cassettes--what exactly that is I am unsure (will Google that momentarily)) from Dartmouth. I'd imagine it would be at least a week for them to be reviewed upon receipt. I am also unsure if I'll be able to see the conclusion of Dana Farber's pathology review before. Curiosity is where I am at.

I guess I should just enjoy some of my favorite "chewier" foods these next 5 weeks and enjoy. Some nice tasty brisket BBQ and such.

How much of a wider excision I am in for, I am not sure of, or what the recovery process is likely to entail. Relatively minor in the larger scheme of things than what many have had to endure. I imagine the first week will be pretty rough, and 3 or 4 weeks later back to roughly normal.

A lot probably depends on how much he decides to take, if he finds anything else on the scope, if the pathology review of the old biopsy indicates something else etc...which is probably why we didn't talk much about the recovery.

I remember the surgeon said no long term disability in appearance, speech function or eating. The fact that he said I'd be home that evening indicates to me it is likely to be worse than the first biopsy, but nothing to keep in hospitalized overnight.

Rainy January day here in New Hamsphire...guess I'll play some video games and go to a movie with the Mrs. this afternoon.

Chris

I was told to bulk up before my surgery but had a fairly invasive surgical plan and they estimated 2 weeks in the hospital. I was in the hospital for 8 days and lost about 15 pounds. I was on a feeding tube. I was also told to bulk up between surgery and radiation. Gained 5 back between surgery and rads. Lost another 15 in radiation. I am 5'-11" tall and before surgery was 167-170 so fairly lean. Came home around 155. Gained back into the 160 range before rads. Dropped to 145 lbs as my low at end of rads. Today, almost 4 years later, I hover between 157-159. That half of my tongue musta weighed about ten lbs! It was my loud side When i did get back onto food, a vitamix was really helpful. Much of my food was blended. I could do soft foods (scrambled eggs, pudding, jello, etc) but to get enough calories was a real challenge. So we blended all kinds of higher calorie stuff (protein shakes, avacados, etc).

Your procedure sounds much simpler if you are going home same day. Keep us updated.

Best, Nels

Just got the Dana Farber Pathology Review comments of my biopsy.

A few more tidbits of information:

SUPERFICIALLY INVASIVE SQUAMOUS CELL CARCINOMA, WELL DIFFERENTIATED
keratinizing type (0.1 cm in greatest dimension).
No lymphovascular invasion.
No perineural invasion.
Margins appear negative for carcinoma and high-grade dysplasia.
Tumor is <1 mm from nearest peripheral edge.

-----------------------------------------------------------------------------------------------------
My attempt at digesting the above:

Superificial; Good
Invasive: Bad (but good that it is just superficially invasive...)
No Lymph Invasion: Good
No Around the Nerve Invasion: Good
Margins apparently clear: Good
Tumor less than 1 mm from peripheral edge: Bad

I guess the kertinizing OSCC is a good subgroup (except for a tendency to escape undetected even low grade on occasion?) in general.

Would be kind of nice to tell the first doctor he cured my cancer with a tiny biopsy slice...but the whole "field cancerization" thing and the adjacent suspicious textured and firm areas has me doubting that outcome.

I could stand to lose about 60 pounds, just not all 60 pounds in my tongue.

Scratchy throat still off and on...hoping just the dry winter air. Tonsil crypts appear kind of white mucousy looking; but might just be a virus or something, that or reacting to me now on red alert for any lymph nodes and rubbing my neck up and down a couple times a day. SMH.

So yeah I think this is a very minimal procedure planned, only thing that may complicate it if is if he finds things he doesn't like on the scope and starts taking stuff out.

I wonder about pre-approval, as far as I am concerned I'd like him to take as much as any thing he wants to nice and early, even if that does mean I wake up and then find out they took more, and I am now in a hospital for days/weeks.

Get it done while I am out; I mean you can kind of mentally prepare for the stuff you describe NELS, I mean to at least be aware that it'll be a rough go.

Not even January 20th yet. February 20th seems like it is YEARS away.

So yeah I don't thing the Mrs. would buy into the "but I gotta bulk up now honey!" before surgery...unless something complicating happens before the planned date.

I guess because it is caught so early no diagnostic imaging or blood labs is being done yet, or perhaps now the the pathology review is completed they may have some ordered? To be determined.

Maybe on the phone appointment 2 weeks before the scheduled date they'll tell me I need to go in for some blood work/imaging or whatever, or maybe only after the next bit of tongue surgically removed gets its final pathology report.

Good stuff, thanks for sharing. Overall, it sounds like you are on this early with a good team.

The waiting really sucks. I recall when I got my surgery date and it was a week earlier than we originally planned. Soon as I hung up the phone, I ran around the living room screaming "April first, lets's gooooooo! Cut this f@##in crap out of me! Let's goooooooo!" while I pounded my fist on my chest. My wife was staring at me from the couch wondering what the heck? This lasted a good 30-45 seconds before I could calm myself down and clarify everything for her. I tear up now just typing this and remembering how good it felt to have a date and plan.

Hang in there Chris. You got this!

Nels

No further cancer found; just more pre-cancer

PATHOLOGIC DIAGNOSIS: A. RIGHT PARTIAL GLOSSECTOMY. LONG STITCH-ANTERIOR, SHORT STITCHSUPERIOR:

CLINICAL DATA: History: Tongue dysplasia.

Squamous mucosa with MILD-TO-MODERATE DYSPLASIA.

Margins are negative for high-grade dysplasia and carcinoma.

GROSS DESCRIPTION: Part A is received fresh, labeled with the patient's name, medical record number, "Right partial glossectomy. Long stitch-anterior, short stitch-superior" and consists of an oriented mucosal excision (1.7 (anterior to posterior) x 1.5 (superior to inferior) x 0.7 cm (superficial to deep)), received with a long stitch designating anterior and a short stitch designating superior, per the surgeon. The mucosal surface is purple-tan and smooth, with an ill-defined white, superficial, pale area (1.1 x 0.6 cm). No definitive lesion is grossly identified. The pale area is located within 0.1 cm to the anterior margin, 0.3 cm to the superior margin, 0.5 cm to the posterior margin, 0.1 cm to the inferior margin, and 0.5 cm to the deep margin.

The remaining cut surfaces are tan-purple and dense. The specimen is inked as follows: Superior-red, anterior-blue, inferior-green, posterior-orange, deep-black. Gross photographs are taken. The specimen is serially sectioned from anterior to posterior and is submitted entirely and sequentially per the diagram. A1: Anterior margin, perpendicular, 3 fragments. A2-A3: Central sections with pale area, multiple fragments. A4-A5: Posterior margin, perpendicular, multiple fragments each.


—————————
So that is good news.

A little confused for clinical history why they coded it as “Tongue Dysplasia” vs. the Oral Squamous Cell Carcinoma from the immediately preceding biopsy and that pathology labs own verification of diagnosis of the slides.

The Surgeon on my initial consult, even before the pathology review was ordered by him, had said responding to my asking, that an over-diagnosis (calling severe dysplasia cancer or something to that effect) was highly unlikely. Then the Dana Farber associated pathology at Brigham and Womens reviewed the slides and concured it was oral squamous cell carcinoma; superficially invasive.

So I gather this larger chunk they removed around the tiny cancerous bump (about like a large pimple) from the last biopsy was just pre-cancerous.

The biopsy only had 1mm margins, so they wanted to remove more from around where the cancer was found and to ensure there were no other cancerous areas.

I gather Dysplasia means potentially precancerous in this context; the cells have intracellular changes heading towards cancer and the architecture of how the cells are laying on top of each other is also disordered and heading towards cancer.

My previous lesion jumped from moderate dysplasia to cancer; skipping the severe and in situ and going straight to a microinvasive cancer. So while good news, and glad to be rid of that dysplasia I realize this will need to be closely followed.

I see the surgeon Wednesday 2/28/2024.

I am guessing this likely means no further treatment necessary for now but will know more Wednesday.

This is the part that makes me nervous; not giving it any missed opportunities if any of the cancer cells did move over the 7 months the cancerous lesion was undetected between when it first became sore around May 2023 and when the biopsy was taken Dec 14 2023.

Surgeon didn’t biopsy anything else, retromolar trigone had some patchy leukoplakia “more consistent with Wickham striae”.

My throat has been scratchy and dry basically since the tiny biopsy 12/14/2023 up until this 2/20/2024 surgery.

Some minor neck, ear, and collarbone fleeting burning/crampy pain that goes in fits and spurts. Armpits have some palpable lymph nodes maybe almond sized. No nodes identified in neck of jaw region. Near the corner of my right jaw, along the thicker neck muscle some soreness but cant feel any lymp nodes.

In a weird way I was hoping they would find just a tad more superficial cancer or something that would warrant PET/CT imaging to rule out any covert neoplasm elsewhere.

I just dont like the idea of cancer having been hanging out on my highly vascular and vesseled tongue for 7 months.

I am glad to be spared any more disabling treatments but at same time am disappointed in myself for not squeking louder last May and getting it biopsied ASAP, despite reading as much on here as I had about early intervention being so crucial.

I was also having night sweats in January pretty bad for a couple weeks.

Off the pain meds now, what 6 days after. Actually stopped the pX meds Saturday and nothing at all starting yesterday, besides popcicles and iced smoothies.

About an inch and half of mattress stitches. Mild discomfort eating and of course soft foods and no spices.

So I’d feel better if they kept looking; but not sure how medically justified PET/CT would be.

Also not sure why some armpit lymphnodes are nearly almond sized.

I’ll be disussing all that with the Dana Farber ENT Surgeon Wednesday.

So I am thankful and guardedly optimistic while not wanting to be lulled into a false sense of everything can be ignored now.

Thanks for any two cents any of you all might have.

Thankful for the greatly skilled medical professionals and the great care I have access to.

Chris,

Thanks for keeping us updated. Overall, good news here. The swollen nodes in your armpits are of concern and you are right to get that checked out. I learned the typical path for oral cancer is mouth to nodes in your neck to lungs. But, hey, this is cancer.

Keep pushing for answers!

Best regards,
Nels

Well the chest and armpit lumps,bumps, vessel and valley (lymphnodes and vessels ?) were enough that I ran it up the flagpole on both my medical chains of command.


My CCC ENT Cancer Surgeons PA-c called me in response to a message I had sent their office. I had said I saw my regular doctor that week for a scheduled annual physical, scheduled even before I even hear of a cancer.

I said I don’t feelg anyything in my neck or jaw line area at all, tongue was healing fantastic, but I have some lumps in my armpit and chest. Should I work that up through Dana Farber or my regular doctor. My Oncology surgeon had previously said it could be axial lymph nodes due to a TDAP vaccine I received 12/2023 before my biopsy from a work finger laceration. But the lumps were getting more noticeable.

IIRC they initially said their office stopped basically at the lower neck clavicle region. My tumor was so microinvasive I am pretty much just in ENT surgery there at this point. So they said I should bring it up at the physical that week.


I do, my family doctor feels one of the groupings and thought it was something to some degree atypical, mentioned briefly about doing an ultrasound to ensure just some benign growth like lipoma (fatty tumor; harmless if all it is for the most part). We then started talking about my follow up care at Dana Farber.

I said I’d see the cancer surgeon every couple or three months for a year or so for close follow up. Nothing further planned at this point, but I had hoped some imagery would be done PET/CT or something just to rule out no other tumors.

My family doctor says something like, well that will ID anything suspicious in your armpits too. He then wrapped up the visit; before I could process that he was kind of implying he was counting on the other place ordering a PET/CT. The same Dr. had asked me to see if there were any tests my cancer Dr wanted him to order and the like, and the other Dr was like nope at this point it is just follow up care.

So I told my Dr at the physical all that and he was cool with it, and I left before I could string my thoughts together that I didn’t think a PET/CT was in the current plans….and I have these lumps.

So I send another message back to my Dana Farber Dr’s office with all of that development. My Surgeons PA-C called me back saying that they would go ahead and order the PET/CT, it would include that region, but it needed to be like 3 months after the 2/20/2024 surgery for healing and to help rule out false positives and such.

I am like ok, but these armpit bumps have me worried to leave them “growing” undisturbed until then.

That weekend I found more lumps and bumps on both sides, nipples to armpits.

So I send my family Dr’s office another message with all that (I have a prayer with written messages; phone calls I can take and receive a simple measage beyond that we might as well be speaking Swahilli to each other) asking to be seen sooner, these things are noticeably more noticeable (LoL) to me, and on both sides.

So I see my family doctors Nurse Practioner for the next available and then they set me up for a priority ultrasound and male mammogram.

Nothing is really found but some smaller lymph nodes and heterogeneously dense breast tissue that makes small tumor detection difficult.

So now I am like great, did all that, still feels like I have some kind of glandular inflamation lumpy bumpy thing going on in the armpits, and they just said let your doctor figure out whatever it is.

So I do go see my Dana Farber surgeon a Monday 4/29/24.

He is a surgeon, so I’d kind of like him to either do a deep palpation to feel what I am feeling (both the fingertip feel for me and the way it feels when pressed together is what makes me practically scream in my head; SOMETHING IS NOT RIGHT HERE. Dont care what an ultrasound or male mamogram says something is up…) or might let me consult with a breast cancer or cancer plastic surgeon who would then feel the lumps and say it is gynecomastia or whatever.

Even then I am kind of hoping they’d feel the chunks and slice some out to biopsy.

With or without PET/CT agreeing.

Either way I need to work that issue to the ground and keep tabs on it.

New thing today, this morning around breakfast is right (same side) jaw pain while opening jaw and chewing.

New, never had before.

Took 4 Ibuprofen for it and gingerly ate dinner.

If it stays low key I’ll just mention it when I see the Dana Farber surgeon in under a week. So far after surgery it is not like it’s possible it is recovery from procedure.

General arthritis or something more sinister is the concern.

Not losing sleep about it, and wont unless it becomes unbearable to eat; then I’ll call his office to if nothing else grease the skids before I head down; so he is aware.

If it mostly subsides I’ll just mention in person and ask about the armpits.

I feel weird even asking my ENT surgeon to feel my armpits, part of it is just that tissue dexterity and feel.

My wife tells the story of an ER doctor pressing on her teenage stomach saying if it was apendacitis it would not present like this…yada…yada…hours later no improvement…they call the surgeon in, one touch and he’s like yep; that’s gotta come out, yesterday, prep her for surgery….and she had a near burst appendix experience…

Why my chest/breast/armpits would just get all lumpy & bumpy and somewhat swollen or sore I have no clue. How bad a possible malady or male manopause kind of thing I don’t know.

Just not a huge fan of relying on medical coincidences; when things in the body are already going squirrelly enough if you know what I mean.

So summarizing the two big nagging questions:

1.) armpit/breast/nipple lumps?
2.) jaw pain?

Not sure what the PET/CT scheduling and confirmation may look like.

I’ll follow whatever recommendations my doctor gives me and will keep trying to pin everything down with the various teams.

If I was getting the full CCC tumor board experience with an oncologist and radiation and all that I think much of that is the standard package for being forwarded to the respective specialist, and I get it mine, thus far us a surgery only case.

I just don’t want to slip through the cracks by being to healthy to not get a full litany of screening; and also not wanting to be frivolous with precious scanner time etc…

Feels hard to not worry about becoming a hypochondriac nor on the other end being a mere spectator on what happens to you in your own health situation.

This forum has been great in getting me to think the correlsonding thoughts for informed consent and the like.

Doctors are great, mine have been fantastic, but trying to figure out how to be thorough and yet effecient with time spent with them.

I guess I don’t know what I don’t know on who I can ask to find a surgeon who knows what man armpit lumps are supposed to be like and to decide to biopsy or whatever.

They are annoying enough as is; unless there was serious risk of pretty severe complications and if I was strongly advised against it; I’d want them gone if they became more cystic or painful feeling regardless of how benign a condition:

So thats my current situation and plan.

Any other thoughts/comments or things anyone would recommend I talk with the doctors about is appreciated.

I’ll update as things go along.

Thank you and best wishes to all,

Chris

Chris,

Good job staying on top of all this and thank you for sharing it. Sure to help others and hopefully someone has had similar experiences and can help you. I do have random jaw/neck pain. I think they are simple cramps. It comes on fast and intense and I try to work the knot out with my fingers and by stretching my neck around. Sometimes they last 5-10 seconds and sometimes they last nearly a minute. I can get them in small batches but normally only a few if I do. And, I can go months without one.

Not sure if that is part of your experience but maybe it helps.

Stay safe and keep the faith,
Nels

So my ENT Surgeon happily obliged when I asked about a surgeon feeling the lymph nodes in the armpit region. Despite not being his region, I just said a surgeons sense of feel was what I was looking for. He felt the same thing my PCP did, lymph nodes or lipomas. I did the ultrasound/mammogram my PCP ordered. That came back normal, a few lymph nodes visualized but normal sized and no calcification or anything suspicious looking I guess. "Hetergenously Dense Tissue that can hide small tumors" was also referenced. So my ENT Surgeon could feel the cluster of lumps and a few of the other bumps, and ordered a CT.

Previously his PA had responded to my concerns saying a PET/CT 3 months after would be agreeable to the surgeon, but during my April appointment as I asked about it and if it was medically warranted, he mentioned my situation likely would face an uphill battle with prior approval for PET/CT at this point.

CT of Chest (to include armpit region) came back unremarkable with the exception of a tiny granuloma in the lingual lung (I guess the part of the lung that is shaped like a tongue!). As I was processing the lingual lung thing, having had all this work up for tongue cancer, it was a bit of a mind trip for me figuring that out.

The surgeon said the jaw pain could just be sleeping on my face weird, chewing odd, grinding teeth in sleep. It went away, and has not returned. So I think that was just an aging fluke or a "slept on it wrong" kind of deal.

Had two tiny blood blisters near my excision site, took pictures and sent them half panicked to the Surgeon...and of course 2 days later they were gone. Probably some minor tongue trauma that I didn't remember or something.

Starting Yesterday (6/10/2024), I think, as I was driving I was just feeling my neck, and jaw region for lymph nodes. Got to the left side (my tongue tumor was on the right, and a tiny, microinvasive SCC when caught), about midway up the neck, between the adams apple and that long strappy muscle that goes up both sides of your neck, there was a pretty sharp pain on deep palpation.

Similar to the feeling if you pull a neck muscle, but it is not the muscle, I can push on the muscle and tendons and nothing, turn my head in every direction, nothing. Just pressing into the neck. I can't feel any lumps or anything at all. Now after feeling it for a day, perhaps I am further irritating a randomly slightly irritated nerve or something, but now it does hurt a bit to move my head around.

Also minor pain when swallowing with my head turned to the right.

I figured I'll give this symptom a few days and try not to touch it to provoke a flare up, maybe take some OTC Ibuprofen or something.

I'll see the surgeon again in like 8 weeks I think, and I'll mention to him then. I am just trying to be vigillant and do my due dilligence, without inundating the doctors offices with more email.

I'm still not convinced the armpit lymph nodes aren't something to keep vigilant awareness of, despite the CT, Ultrasound, and Mamogram showing nothing of concern. It's those tiny tumors that don't show up well, when you want to catch it, and that's kind of my mindset.

So far I think I've been pretty reasonable without delving too far into hypochondria land.

Maybe I am just at the age where random body parts just start feeling like you were screaming your head off at a crazy concert all night at a crazy raging party, but in reality did nothing different than you had in the past 1,000 days. That and the fatigue as if I was out all night on a bender...and really just got the same sleep I always did.

At this point I think I'll ask the Surgeon about just paying out of pocket for a PET/CT if insurance is going be an obstacle.

Oh, the only other thing is still have some tiny white patches around the excision site. One I think is just where a suture was, and I can understand the tissue scarring over the hole as the suture is dissolved or something. The other one is far enough away, it is a bit concerning. The Surgeon will of course look at everything each visit.

The Wicham's Straie in the retromolar trigone area on both sides with some patchy leukoplakia hasn't been biopsied. I guess it is pretty faint, and uncertain if that is what it is. I had noticed it and asked about it, and when he did the surgery he looked at it closely and made those notes. On the right side, way down low where it is nigh impossible to see, there is a cluster of a few whiter oval shaped spots, probably half the size of a grain of rice each. Speckle marks, just a bit odd to the laymans eye.

Oh had my first dental visit last month with the dentist (not the one who originally discovered the leukoplakia and inculcated this seriousness with which I address this issue, she was great, was like you DO NOT mess around with unhealing mouth lesions.) who had said when I stoped for an urgent visit before my 2nd biopsy, to ensure it wasn't just rub marks on my tongue from a lose tooth or whatever, that the red spot that was sore on my tongue was "oh, that's nothing. You have nothing to worry about." had the pleasure of saying to the dental hygenist when she asked if there were any changes to my medical history, I was like yes, you remember that spot on my tongue, biopsy came back as OSCC. The dentist was sympathetic and decent, so I said nothing like "you should probably stop telling your dental patients to not worry about sore spots on their tongues..." as I had envisioned if she was flippant on this visit.

I really want to find the originally dentist from years ago, she left the practice, and I don't know if she married and changed names or what, but I really wanted to thank her for instilling in my the vigilance so that we did in fact catch the OSCC at the earliest possible point (unless you want to put Carcinoma In-Situ, regardless my tumor was a tiny grade 1 when it was excised). She did an excellent job "doctoring"--that is teaching me, anything that doesn't heal in 2 weeks...BIOPSY. And now that you have dysplasia confirmed in biopsy, close follow up for life with an oral cancer expert. Now with an actual cancer, all the more close vigilance.

So that's that for now.

Thank you Nels, I didn't have any thing done besides a tiny partial glossectomy, so I can't really think I am in the same boat as you folks who have had major surgeries and neck dissections and all that recovery with scar tissue and all that.

Peace, Out,

CQ

NEW LEUKOPLAKIA FORMED ABOUT A CENTIMETER BELOW PARTIAL GLOSSECTOMY SCAR WHERE THERE WAS A MICRO-INVASIVE OSCC

Well, I guess I'll post this here as a follow up to my original thread, and possibly repost as a new thread with a separate question.

So I saw my ENT Oncology surgeon last week for a August follow up from my February VERY partial glossectomy. Was like my 3rd post surgery follow up check up.

Everything healed up very well. Zero pain or problems like a month or two after the surgery.

For the most part that continues to be the case now.

I get an occassional cramping like pain, very minor, in the area that's only really been a thing in the last month or a little more, with a slight increase in frequency.

I discussed that with the surgeon, and he explained the tongue had been through quite a lot, and scar tissue forms and changes and things get pulled tight etc.

To me it seemed a bit odd that this long after the surgery I am getting the cramping sensations.

Unlike the little pimple that turned out to be cancer, there is no currently persistent sore spot.

I have noticed, and discussed with surgeon a new leukoplakia, about 1 cm below the scar from the surgery.

It seemed to be too far from the main scar to be a suture scar, and he agreed that it is not likely to be that. It did not feel firm to him, in fact he could not feel any texture to this lesion at all. Which neither did my first moderately dysplastic lesion. The cancer pimple did protrude a bit.

I can see tiny white dots around the main scar that I think are likely where the sutures have been absorbed and tiny little areas of scar tissue, that would be similar in size to the sutures.

The new leukoplakia is about the same sub-centimeter or maybe pushing a centimeter as the first lesion way back. This one does seem to have some pitting or ulceration to it, especially when I manipulate the surrounding tissue. It's not sore or sensitive at this point.

The surgeon did say he could do an in office biopsy right there in the exam room when I come in for a bi-monthly check up, that I would not need my wife or anyone to come, as it would just be local anesthetic and a couple stitches.

I did not try to show him the dimpling effect it had when pressed, it kind of slipped my disorganized mind.

I think I know what Nels and some of you other active cancer veterans would say: "Just biopsy it".

I am leaning towards doing that next time, or at least more seriously discussing it with the Dr.

Obviously if it progresses, AT ALL, between now and October, I'll request he go ahead and remove it and sent it off to the the lab.

Unless he says if we start doing this, we'll be repeating the process every couple months as a new leukoplakia pops up.

So I guess my question is for folks who have had cancer and multiple leukoplakias, for NEW ones do you pretty much ALWAYS get them biopsied after the 2-3 week period of "if it doesn't heal; BIOPSY IT!"?

The original lesion was biopsied ONCE, and so long as no changes, I just saw an oral surgeon once a year.

It changed, got the little pimple like eruption that was SORE when manipulated, and stayed sore days after, so that change triggered the biopsy that found the cancer.

I guess that would be a prudent approach, every time a new one pops up, confirm it is not cancer, then just watch it (like a hawk).

Thanks in advance for any words of wisdom.

I'll go spelunking in the past forums and see if I can find anyone else experiencing new post surgery leukoplakias and how they dealt with them or what people said how they dealt with them.