Hello Martin,

Glad they did not find any cancer in your lymph nodes.

That's an understandable reservation about the "potato peeler" approach of having your tongue "skinned'.

When mine was still just leukoplakia, and a rather small portion of my tongue, one doctor offered a laser treatment for that area. Not sure if that is how they might "peel" your tongue, or if straight up razor removal or what.

Did your doctors discuss if you'd still recover taste? If it were me, sure it beats a total glossectomy and having a flap, but its a big hit. What about recovery? I guess I'd have a zillion questions.

Have you sought a second opinion? Is your medical team at a comprehensive cancer center? If not, perhaps seek a second opinion there?

What about chemotherapy of the "light" varieties I've only heard bits a pieces of some trials, I believe there are some medications that show some evidence of helping (ditto with the laser, although my surgeon said the evidence wasn't particularly good/strong that lasing the remaining moderately dysplastic tissue on the borders of my biopsy site would prevent conversion to cancer. I chose not to do it, and the area did develop cancer about 4 or 5 years later.

Who's to know if the laser would have prevented the conversion of the dysplastic remaining white spot to cancer. The surgeon then (a different one than my current) said that it's not really clear yet if there is benefit to eradicating all dysplastic tissue at all costs. We reasoned together that moderately dysplastic, the kind mine was, was low enough risk, ~ 10% of converting to cancer, and that chronic inflammation itself is thought to be a potential cancer triggering agent, that constantly carving off dysplasia...may not provide benefit...I could still get cancer either way. If it was carcinoma in situ, absolutely they would go back until they had sufficiently wide surgical margins to ensure all carcinoma was removed. It the remaining dysplastic tissue was graded severe dysplasia, I think I'd probably lean harder into doing more on the preventative get it before it turns approach.

Mine was only a sub centimeter area, a bit larger than a pencil eraser, that ended up one stage past carcinoma in situ, a microinvasive stage 1 sub-centimeter lesion.

Because my tumor was so small and superficially invasive, we forewent any sentinel lymph node biopsies in my case, although I am heading back to see my surgeon next month, two years out from my partial glossectomy, that found no more cancer, just more dysplasia, the biopsy had removed all the cancer...my neck is now giving me some concern. My surgeon did not think it was necessary although other surgeons may have recommended differently, because of these forums and probably a discussion with my surgeon (don't recall that) I was aware of the remote risk of missing an early spread to a lymph node. It's one of the age old cost/benefit/risk weighing decisions.

There is always the chance of "occult nodal metastasis", that is even with small undetected tumors, there is a chance enough cancerous cells are shed that they make it to the lymph nodes undetected. It's also possibly that these early spreads to lymph nodes don't show up on CT or PET/CT, but the good news is you had your lymph nodes biopsied and they found no evidence of disease there.

I've had one PET where I had armpit lymph nodes (same side of my body as my right lateral tongue tumor) that were moderately FDG avid, two needle biopsies, and nothing found. It would be all but unheard of for a "skip node" metastasis of that nature to skip my neck nodes and go past the collarbone and land in the armpit, but if you roll the unlucky dice like my father you can have two, or even three as in his case, primary cancers simultaneously. My Dad had a chronic lymphocytic leukemia and my sister has follicular lymphoma, so with two near relatives I was also alerted to the possibility of the lymph nodes being a sign of a form of lymphoma.

The PET did show some submandibular nodes that were slightly FGD avid (taking up the radioactive sugar tracer and showing up on the radiation detector as a "hot spot" where cellular metabolism was increased), but the oncology radiologist deemed that was likely due to reactive lymph nodes--meaning a normal immune response to say a gum sore or gingivitis or cold sore or whatever that was making a set of lymph nodes more metabolically active as they fought an infection of some variety.

After my last surgery, a very minor partial glossectomy, probably less than 1% of my tongue, no further cancer was found, but more "low grade dysplasia". The pathologist in the last report didn't divide it into mild, moderate and severe dysplasia but used the low and high grade, where they lump mild and moderate into the "low grade" dysplasia. My surgeon also was not concerned with the PET results. He wasn't dissmissive of them as being potential evidence, just nothing he was going to be chomping at the bit to biopsy yet, given all the information he was following in my case. So I am back in the boat I was. I am comfortable with my surgeons recommendations, and will still be, even if I do have a recurrence, or need a neck biopsy in the future.

My intentions where to be followed up annually by Oncological ENT for life. Two years out from surgery I should be seeing my surgeon twice a year or so for another few years until 5 years then annually therafter, unless something changes.

Currently my neck is giving me some symptoms, had a CT a couple months ago, and nothing meeting CT criteria for nodal concern was noted, just some post-surgical asymmetry with my surgical side being a bit larger. So now I am doing the squeeky wheel gets the grease approach, as my "Scooby sense" are still up despite the clean CT. I kinda would like a 1 year follow up PET/CT to see if the armpit nodes are still "hot" (or warm even). If so I might see about insisting on excision biopsies of those nodes, as some times when they poke a node with a needle, it's possible portions of the node are not cancerous and they miss the actual bad tissue.

I hope your tongue function now is currently healing well, only being a few weeks out since losing a quarter of your tongue! I hope your pain is well controlled, swelling is going down and you are starting to be able to swallow near normal liquids again and maybe working up to smoothies and such.

I hope you find some better answers and more information to make a better informed decision. I'd certainly want a second opinion if I were in your shoes.

It's your tongue. The first surgeon I had that offered the laser, said something to the effect, and he was obviously joking, and mine was then only potentially pre-cancerous, but he said something to the effect of "I've had patients with very low risk lesions also demand I remove all potentially pre-cancerous dysplasia, and against my recommendation had large portions of their tongue removed...I am a surgeon and I'll gladly cut off as much as your tongue as you like, but if it were me I'd wait and see....". I was like no Doc, if you don't think it's very likely that it will ever convert to cancer, I'll keep the rest of my tongue, thank you very much! (He was not the surgeon who did my partial glossecttomy, in fact he never did a biopsy on me just the follow up of the first biopsy for a few years then he moved cities...

I certainly would want to recover from the current surgery to decide on how to move forward.

Sorry you are faced with such a dilemna, but I would not imagine there is any urgency to decide on how to proceed right now.

I guess I'd want to my doctor to explain it to me why they are recommending this approach, to my satisfaction. Maybe it just sounds more debilitating than it really is? I'd definitely want as informed a consent as possible and to really know what I was getting in to.

I guess that's another thing to help you weigh it, is your current experience post surgery they way they described it to you going into it? If they were accurate in preparing you for that that's one thing.

Best wishes for you in your recovery and information gathering on your next portions of your treatment plan moving forward!

Sincerely,

Chris

Sam, I am just wondering what your symptoms were or if you had any? Did you have enlarged or painful lymph nodes? Could you see anything at the base of your tongue (it pretty hard to view)? Thanks.

Thank you so much for your reply. When admitted for the peritonsillar abscess, initially they swabbed the enlarged tonsil which was blocking my breathing. This did not come back with confirmation of any bacteria. I doubt very much that they test these abscesses for HPV but now you have me wondering why? They did tell me that the infection can be hidden quite well within the abscess. When the abscess finally burst on the third evening after being pumped full of a myriad of antibiotics and steroids, they failed to take another swab.
Regarding the persistent gum lesion...this is the area that they biopsied. Your timeline is bang on...the pathologist said they will call me exactly two weeks following the biopsy on July 28th with the results. I'm really trying to keep busy until then and proactively choosing a healthy lifestyle. I know that there is only so much one can do and control. Please know that just getting your response has made me feel more even keeled.

My understanding is that any cancer, even slow growing "indolent" tumors acquire even more mutations the longer those cell lines keep reproducing. So a slow growing, low risk, clump of cells that become cancerous, even if initially slow growing and not likely to spread, can acquire mutations over time and the disease can transform into a more aggressive form.

Thelma: Recommend you make an appointment and check with your Head and Neck Surgeon?

Firstly, my condolences on the loss of your brother Chris CQ! 1000% agree with everything you said! Unfortunately, since OCF's Founder Brian Hill sadly passed this website has really been impacted:( I believe it desperately needs individuals like you to help take up the reins and absolutly promote it's invaluable standing wherever you have an opportunity in the H&N arena!

Ankurtg: So sorry to hear about Mom! I would recommend if possible that you get a third opinion if possible from somewhere like Memorial Sloan Kettering https://www.mskcc.org/news/what-to-know-about-getting-second-opinion-after-cancer-diagnosis
and/or UCLA........https://www.uclahealth.org/international-services/become-patient/telemedicine/second-opinion-consults
These days it is a MUST.
I wish you the best
Rick

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Hi Dhyana,

Welcome to OCF and thank you for reaching out. I am sorry to read of your complications. Although I have not experienced what you are going through, I recommend getting this checked out ASAP. With your history, staying on top of this and having regular checkups with your H&N doctor is critical.

Please update us as you go along this journey. It will certainly help others down the line.

Stay safe and keep the faith,
Nels

Specialized reconstruction is complex. Have you looked into university hospitals or larger centers that focus specifically on these types of procedures?

I am sorry to hear that the usual options haven't brought any relief. Hopefully, this new specialist has some better insights for you.

The stress of waiting for scan results is immense. I am glad it turned out to be just inflammation and not a recurrence.

I was skeptical, but the dryness was just too annoying to ignore. Reading this page on why people tape their mouths at night made me give it a shot. The biggest difference for me? No more morning headaches, probably because I stopped snoring and finally started breathing through my nose properly.

That sounds frustrating after everything you have been through. Have you discussed this specific issue with your surgical team yet?

It's best to check with your surgeon when you notice such a distinct change, just to be safe and clear up any doubts.

That sounds incredibly painful and frustrating, especially when you feel like you're not getting clear answers from your doctors. It might be worth asking for an urgent appointment or a patient advocate if the pain is becoming truly unmanageable while you wait for those scan results.

Thanks PJE.

My coughing fits are mostly limited to the daytime; I may cough for a few minutes after laying down to sleep, but I don't typically have another episode through the night. It's interesting to note that the coughing-runny-nose-watery eyes sessions mirror a typical histamine response to an allergen. My bronchial tubes are getting a bit sore from the intensity of the coughing.n

On another note, are you being proactive regarding your carotid artery on the affected side? I'm hooked up with a vascular surgeon who has me scanned each year for stenosis. Thus far my common channel is <50%, but where a smaller artery bifurcates off to perfuse my face, there is >50% atherosclerosis. He's not worried about that. My reading has taught me that the rad therapy is particularly hard on the epithelial ( innermost ) lining of the carotid artery, possibly resulting in an increased rate of sclerosis and risk of stroke - the fun never ends, lol!

Take care Brother...

dAN