Wow. This is news to me too. Mine was strictly on the tongue, and I mean tongue as we laymen think of it, not as doctors do, and it was HPV+. Now I hear that all that treatment stuff may or may not have mattered and doctors were telling me I'm gonna be fine because of the good prognosis when that may not be the case? Sheesh. No wonder some of my supposedly good doctors seem so flaky lately. (And no, there was no spread elsewhere, not even lymph nodes, though it did recur in the same area.)

Gah.

You have all my sympathies, for sure, Marv. It's a crazy ride no matter what answers you get.

Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery