Caregiver, my Husband Kris has had a total Glossectomy ( along with a total laryngectomy etc.) this was for a recurrence and was considered salvage surgery. Kris had no other treatment for this recurrence and is NED 4 1/2 years later.
Was it hard, of course it was. Kris too initially refused this surgery, but after reconsidering and listening to my pleas and cajoling , outlining all the good things In life and reasons to live for, he agreed to go ahead.
Neither of us have any regrets. Kris has a good quality of life and is by no means an invalid. He swallows all his nutrition , though it is only liquid. He does talk despite also having no voice box. He is very active and looks after our 3 acre garden by himself. We travel overseas and this has proven to be no problem.
Kris has seen our Son get married. The birth of our first Grandchild. Life is good.
If you want to ask us any questions , please do.
I know this is difficult for you and pretty soul destroying. Believe me, life is still good after a total Glossectomy.
Tammy

Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!