Thanks guys. Always learn something here. never ends. It is a quite low incidence disease and just last week I met with a fellow survivor who just finished up a 16 hour surgery to replace jawbone with a leg bone. He is doing amazing at 7 months. You can hardly see the scar along the lower jaw and just getting a partial to replace the teeth that were extracted.

He mentioned how the diagnosis was not all that obvious. I think the original cancer team are not experienced in such late side effects. RO, MO, even ENT just don't come across it often enough.

I think everyone needs to find a good oral surgeon that has experience with oral cancer patients as they are probably one of the professionals who can assess the onset of ORN.