Hello MMarvel
Sounds like questions for your doctor and/or second opinion with someone else reviewing the slide pathology. My first oral surgeon, who himself was diagnosed with Oral cancer was insistent on a particular oral pathology clinic after he biopsied my tongue lesion. As I understand it some subjective judgement can occur with pathologists differing slightly on what may be borderline mild/moderate or moderate/severe dysplasia, but the criteria for SCC pretty clearly delineated that a board certified pathologist is pretty much going to agree 90-some percent of the time--But that is what second opinions are for.
If I were in your boat I'd probably find one of the
https://www.cancer.gov/research/infrastructure/cancer-centers "Comprehensive Cancer Centers" or like you read many of the folks here strongly suggest, if possible, consulting with if I were diagnosed with oral cancer, and ask those questions, and see if they could take a look at the slides for you and/or explain. If your current surgery was one of those centers already, I'd be asking those questions to the doctors there.
For me, my lesion was so far, just moderate epithelial dysplasia, but I'll be on my 3rd oral surgeon who is following the lesion with annual checks, and reminding me to call if there are any changes.
No cancer for me, thankfully, thus far, but I had similar question regarding if the dysplasia extended to the margins, might not they want to go in and get all of the abnormal tissue and see if beyond the tissue they microscope-d on the 1st biopsy, that the remaining tissue on my tongue has equal or lesser grade dysplasia (as you can't tell just by looking at it without microscope/dyes/processes etc...)? What if there was a chunk they left just beyond that was carcinoma in situ or worse?
I asked my second oral surgeon who the first referred me to as this second one specialized in oral cancers and while he acknowledged you can't know for sure if something is bad without biopsy, in my case he was comfortable just monitoring it at the gross macroscopic level. He could take more tissue if I asked, but the cost/benefit and risk of doing it versus not doing it with tongue complications etc in my case was such he recommended not going aggressive just because the margins of the biopsy still had dysplasia.
He explained that the research isn't real clear for dysplastic lesions (non-cancer) whether aggressively removing the tissue surgically or with lasers is actually preventative in terms of the increased risk of progression to SCC, i.e. whether the surgical intervention on the dysplastic tissue was a larger irritant risk in triggering further inflammatory changes to the tissue, more dysplasia, and more risk. Sometimes the biopsy site responds (for dysplasia) in the post surgery healing process so the adjacent tissue changes towards a more healthy state in the healing process he said.
He also was confident that in my case the most irregular tissue was almost certainly going to correspond with the visible lesion (to the naked eye) and the original biopsy removed all of the grossly visible lesion, and that it was very unlikely that the tissue just beyond my biopsy site that appeared grossly normal, would be worse than grossly abnormal appearing tissue, despite the dysplasia extending to the margins of the biopsied tissue. So that is saying he took all of the white lesion with the biopsy and then a little of the normal looking tongue, and microscopically some of the normal looking tongue was actually still dysplastic.
My second oral surgeon (the one specializing in oral cancer) is moving out of the region, but he wants me to keep following up with an oral surgeon who focuses on oral tumors. I've yet to have a follow up appointment with the 3rd oral surgeon. There are some mild grossly visible changes to the tissue adjacent to the biopsy cite scar tissue (was there before too, but only clearly visible occasionally hard to describe--looks like texture of tissue is different, color the same, but smoother). He wasn't too concerned with what I was "seeing", he thought it looked A-OK. I'll probably ask the next doctor to reconsider if it is likely worth the risk to take another biopsy.
I think I've heard that in some cases low grade in situ tumors can even undergo spontaneous remission, that the body in a sense, cures itself of very early stage tiny tumors. That and irritated tissue can undergo dysplastic changes (trauma, rubbing etc...), or sometimes look like dysplasia, but not have the other markers pathologists use to make their diagnosis.
So don't know if that in your case perhaps they got the vast majority of the cancerous cells, and perhaps the rest were killed off in the healing process of scar tissue formation etc...but those are good questions to keep talking with your doctor(s) about.
I'd imagine with a prior cancer diagnosis they'll be watching your situation closely.
I know I'd be leaning hard into second opinions and such and running my case up the highest flagpole I could find if a biopsy came back oral cancer for me, and what happened to you happened to me, while being thankful they could not find any more cancer. Still getting it early is key. When my second oral surgeon said something about being willing to take more tongue if I wanted, I told him that if he thought it was worth it, I'd rather have a smaller chunk of my tongue taken very early in the progression, than miss it and have to undergo more radical surgery later. He appreciated and identified with that concern--and that is part of the judgement call of doctors making the best recommendations they can to their patients. Don't want to accidently take too much tongue needlessly and risk nerve damage, loss of function etc, if not necessary, but also don't want to miss opportunity of nipping the cancer in the bud in the in situ stage. Why I could never be a doctor--having to make those kinds of calls--almost gives me an ulcer thinking about it. So he advised me against a larger biopsy looking for margins clear of dysplasia, as my tongue is otherwise currently healthy. I realize we are all human, and he made his best medical recommendation and I am comfortable with it. Most likely he made the right call--is still possible something could happen down the road I'll regret, albeit a very low risk.
I asked my oral surgeon about enrolling in trials for diagnostic imaging and such for following the lesions--to see if they could see it on say a PET scan or whatever. He wasn't aware of any such studies. Lots of open questions remaining regarding the pathogenesis of oral cancer and how strong a link to different grade dysplasia and to what extent such lesions truly represent increased risk of SCC development.
Anywho, glad they did not find any additional cancer in your case--seems like grounds for celebration, yet with vigilance in monitoring and getting your questions answered by your doctors and/or other doctors.
Best wishes for finding your answers from your doctors and continued good results and negative pathology reports!
