JillandDad,

I understand full glossectomy & recurring cancer. Had stage 1/2 tumor removed from tongue Nov 03, recurrance late Dec. 03, by time of surgery 3 Feb 04, cancer had involved anterior 3/4 of tongie and started to involve pharynx. Surgery lasted 12 hours and it was touch & go. Subtotal glossectomy, forearm free flap reconstruction and Pharyngoplasty among other things. PEG and trach. Lost trach in March 04, but still have PEG. When a near total or total glossectomy takes place, the reconstructed "tongue" looks like a tongue but is stationary at floor of mouth.
Impact on quality of life is great but varies from patient to patient. My speech is poor even after a palatal prosthesis and I still need PEG since my therapist said I sould use a syringe which "dumps" liquid at back of mouth since "tongue" doesn't move. After a year of therapy and two esophagus strechings, I use syringe to supplement my PEG by oral intake of mostly fruit juices and occaiional shake.

However, I know of two others who have posted with more success in better quality of life. Without protecting privacy of the posting, here's an excerpt=="... I am 18 months post rad/chemo but first had surgery to remove my whole tongue. I am able to talk pretty darn good (use a palatal drop prosthesis) and haven't come across anybody who can't understand me. I work full-time for a major corporation and my speaking ability hasn't prevented me from doing my job. I don't enjoy talking on the phone like I use to but that's just another one of those adjustments I've had to make of my new life. I'm also able to eat just about anything (steak, chicken, seafood, veggies, pasta) except for breads, cookies, chips, cake (all the good stuff!). Even the "forbidden" foods mentioned are doable with a LOT of effort but I find it's not worth it." This person had PEG removed less than 9 months after radiation!
So QOL does vary and perhaps he would adapt better than I have so far. Also, I am very lucky to still be cancer free. So don't give up.

Jim Haucke