Dave,

You asked persons who had tongue surgery what was it like short term and long term. Depends on how much of tongue they take.
I'm lots older (69) so I can't imagine having this at an early age. Just ain't fair!
First tumor was on side of tongue and I waited 4 mos. to have removed in Nov 03. Took about 30% of tongue but I could eat and speak just fine. Nodes had no cancer so I was released a month later with no rad. seven weeks after 1st op, I noticed growth at base of tongue. Since it was holiday season, didn't get diagnosed until mid-Jan 04. Op was Feb 4, 2004. Cancer had grown aggressively to where they took almost 85-90% of tongue with forearm flap, a pharyngectomy, and had to break jaw to get at cancer. Had 36 rad until May 04. Trach in until mid-March 04 when it fell out on its own. Still have PEG tube which has been a life saver. If I had to do it over again, I would have insisted on rad right after 1st op in Nov 03, but its too damn late.

Its no question that extensive tongue surgery is a quality of life destroyer. Speech isn't worth a damn even though I had therapy and I'm getting to swallow liquids now through a syringe because I don't have a tongue.

I would hang on to that tongue as long as I could. I also add this is a great site. I never would have learned about a palatal prosthesis which I am looking into thanks to a brave member, nancyt. This is one brave lady who had a total glossectomy (mine was subtotal)who was off the PEG tube 8 and 1/2 months after treatment. She is the inspiration that keeps me hoping. Right up there with Lance Armstrong.

You are a true inspiration, Nancy. God Bless!

Dave, keep asking questions and push for options and answers. Take it from an old guy who found out the hard way.

All the best,

Jim Haucke
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T4N0M0 (Stage 4) SCC base/anterior of tongue, pharynx