Are they even doing anything for the pain? GERD can be treated, for example, so if that's it, they would hopefully give you suggestions or refer you to the proper specialist to give you suggestions.

I'm not clear why a CT scan would be a waste ... aren't they meant to pick up the things doctors can't see for themselves? Especially the ones with contrast? And if it would ease your mind, that's not a waste either.

The HPV statement also confuses me, as it can pop up in other locations in the oral cancer areas ... was he meaning just in the area you were having difficulty with, that's where it would be likely? If so, he may be right, I wouldn't know about that. But if he was saying that's the only place HPV cancers crop up, that's not quite right.

Judging by the number of queries that pop up here, it seems that most issues don't end up being cancer, which would be fantastic for you. But you're right to keep asking and checking, because you are aware that something isn't right with your body, and you do deserve to find answers and get it treated. I hope your appointment goes well and the new specialist listens and understands.

Nobody here is a doctor; everyone's patients or caregivers, so nobody can diagnose or offer treatment suggestions ... just their own experiences. There's some real whizzes here who've been through a ton and collected a lot of knowledge from their experiences. They might be able to reassure you further. But you're on the right track by continuing to see an answer for the pain. ((Hugs)) and good luck with that.


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