Had my 2nd 6 month follow up with oral surgeon in Boston. He wasn't the surgeon who did the biopsy. He is moving out of the area, so he still wants me to follow up every 6 months with an oral surgeon who specializes in malignant lesions.

He did not think it was necessary to re-biopsy my tongue at this point. I guess there is scant evidence on if disturbing dysplastic lesions via surgical removal is actually preventative or not in terms of preventing malignancy.

So I've yet to set up a future appointment with this other oral surgeon at Dartmouth Hitchcock in NH.

The longer oval shaped lesion closer to the tip of my tongue from the original lesion (moderate dysplasia), yet adjacent to the biopsy scar, that was more of a round white lesion remains. Perhaps a bit longer. It isn't as white as the original lesion, but the texture of the tongue tissue there is a lot smoother than the rest of the side of my tongue. This other lesion was never biopsied.

I'd kinda like to get set up with a comprehensive cancer center, just in case, and to offer to be a guinea pig in terms of participating in any ongoing research in following patients with dysplastic lesions and developing whatever protocols for repeat biopsy or diagnostic monitoring kind of thing. E.g. I am Curious if researchers have ever put someone with dysplastic lesions in say a PET scan and see if the cellular metabolism of the lesion shows up there. The science of it all interests me.

At this point happy to just do the 6 month monitored visual check ups.

I do appreciate the tensions the doctors face when dealing with more invasive or extensive biopsies where greater risk of loss of function is balanced with uncertainty of whether even for severe dysplasia short of carcinoma in situ is of any benefit vs. missing something early when you can nip it in the bud.

At the same time knowing that they can't tell just by looking at a lesion, I kind of wonder what is the point for just showing up every 6 months. I guess there could be obvious features they look for (red spots he mentioned) or odd changes that would then trigger follow up biopsies.

I'll bounce this off my primary care team at the VA clinic.

Hope things worked out for Mrs. Karl and everyone else.