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
