Hello Kathy, your consultant is correct. This not a common surgery. I have " met" lass than half a dozen others online since Kris had his surgery. It is a hard and gruelling surgery with a long recovery time. I have asked Kris , on a few occasions, if, knowing what he now knows, would he do this surgery again?
He always replies without hesitation, definitely yes.
Please do keep in touch. We both are here to support you and Tony and answer any queries you may have.
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!