Hello Marv,
I'm the Tammy who Gloria mentioned. My Husband Kris has had a total Glossectomy, coupled with a total Laryngectomy. So a double whammy. His surgery was in March 2012. We were told he would be dead within 12 months if we chose not to do the surgery. Kris is alive and well with NED. Would we do this all over again ? You betcha. Life is good. Truly, it is. Kris swallows all his nutrition, although it is in liquid form. He speaks. People without their tongues can speak. Kris manages speech without both a tongue and voice box. He is fit and active. We travel - with blender. Long International flights are no problem.
Best of all , Kris has been here to see all our Sons grow up. We now have 2 little Granddughters he adores.
Life is certainly very different from what we imagined, but it is good. I have met a suprising number of others who have also been through this surgery. All lead good lives.
Here to answer any questions you may have Marv.
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!