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.