Well, the local tumor boards have weighed in, and the surgeon and radiologist both sat us down to discuss my options.

They both say that it is about 80% / 20% whether it is gone or will come back, since I only had tongue surgery so far. I have three choices: just walk away and consider it done (none of the local docs favor this), have lymph node surgery as a preventive measure even though the scans were good, or do radiation to further zap the tongue and lymph nodes.

I don't really feel comfortable with any of those options. Walking away is scary, but causing further and potentially unnecessary damage to my body seems like a bad idea. Plus I would still have the HPV virus, right?

Getting very frustrated right now. It shouldn't have to be this confusing!

Sorry if this is mixed up. Typing on my tablet is a nightmare.

Kristen

Last edited by KristenS; 07-01-2013 04:35 PM.
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