Hi Mark, I am sorry to hear that you have had to have this fairly brutal surgery.
It does sound that you are doing well on the swallowing front. Did you get that swallow test before you left the hospital? Do you cough after swallowing liquids?
My Husband Kris has also had a total Glossectomy , plus a couple of other bits.
He kept his PEG tube in for nearly 4 years, even though he was/is able to swallow all his nutrition. I would be cautious about having it removed too soon. You are not yet out of the woods and in the clear. Be patient.
I also agree with Christine and David. Please listen to your medical team. If they are recommending chemo and radiation then I would do it. What did your Pathology show? Are the margins clear and by how much. Are any lymph nodes involved. Any extra capsular extension. Neural extension. Are you able to get another opinion from another cancer centre?
That said, Kris did not receive any further( note I am saying further) chemo or rads after his salvage surgery. I did ask the team the reason not to follow up with more chemo and radiation and they told me that he had not responded to either of these treatment modalities. His Base of Tongue cancer was initially treated with chemo and rads, but his tumour recurred 10 months later. So, they said, why treat him with treatments that had not worked for him. I understood this logic, but I would have preferred that his surgery was followed by another round of at least radiation.
Have you had previous radiation prior to your surgery?
This is a nasty and aggressive cancer. It needs to be hit hard. You are taking a gamble here. Of course, you are entitled to make this decision for yourself. You must be a brave Man.
Please at least consider that 2nd opinion. I wish you well.
Tammy