I have been diagnosed with a new SCC tumour on the remaining side of my natural tongue. My surgeon is going to remove the front 1/2 of what I have left of my natural tongue and add a flap from my wrist (which was done in Oct 00 with my first surgery). I have been very sucessful in my recovery of my speech after my first surgery, but I still had the full right side of my tongue to control the left side flap. My question is: Has anyone had surgery that removed the full front of the tongue and had it replaced with a flap and if so, are you able to speak clear enough to be understood by most people (I know family comes to understand us much quicker than others)? Also, my surgeon plans to make a new flap using my right wrist this time and since I am right handed, I know it will be very tough for the first while until my wrist use is back to normal. Has anyone had a flap from other areas of the forearm (I want to ask him if he can use the skin closer to my elbow of my left arm). Any input would be appreciated. Thanks alot!

Welcome, Gail. I cannot answer even one of your questions, but I am sure there will be someone here who can. Keep checking back. A couple of weeks ago I read about a tongue transplant, which seems to be successful, so there is always that option down the road (grin). If we live long enough, there will be a cure for whatever ails us. Stay strong, Gail. You won the first round, and I am sure you will survive this in good shape too.
Joanna

Sorry Gail I can't answer any of your questions either. Will you be having this done in Calgary or Edmonton?
I did want to comment on Joanna mentioning of the tongue transplant. At my check-up on Thursday that was the topic of conversation. I learned a few things about transplants from my surgeon and the down side of them.
David

David D & Joanna,

Thanks for your replies. Great news that there has been a tongue transplant. What were the negatives that your Dr. told you about David? I am having my surgery at the U of A Hospital in Edmonton as I did my first one. My Dr in Edm is an absolute saint. I have such confidence in him and feel I will survive anything with him on my side(unless of course if I was ever stupid enough to take up the cigarettes again as he told me that after working on me for 15.5 hours, he would kill me himself if I ever started smoking again!). Anyone have more info on the tongue transplant?

Gail, here is the link to my original post about the transplant, and that is ALL the info I have.

http://www.oralcancerfoundation.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=000279#000000

A search on the net might garner an update on this guy's condition.

I am really happy to hear what you have to say about your doc. Having confidence in the people who are caring for us is a wonderful thing and helps so much with the anxiety. Good things for you, Gail!
Joanna

This is too early to tell if the transplant worked or not. OCF is following this via several doctors that we are affiliated with, and we will put a posting up as soon as the outcome can be commented on with some certainty. I would not look for this to be come commonplace in the US in the near future though. While the prospect of going through this again is likely not a plesant thought, losing the base of the tongue is where the serious problems come up... Here is the link to the news story. http://www.oralcancerfoundation.org/news/story.asp?newsId=76

Here I am, back to answer my own questions in case anyone is interested... The flap my doctor needed to take had to be from another site as when he took from my left wrist, the blodd supply was then used up on that arm. He did take from my right wrist and I came home yesterday, only 9 days in hospital this time (was 14 last round)! Also, had the rest of my tongue out, all I have left is the base and the speech pathologist seems rather impressed with my ability to speak and enunciate most words, L is a problem I haven't figured out yet. What my NEW question is: I know I read somewhere on this site that there is a cookbook for soft, managable cuisine somewhere but I can't remember where read it. Can anyone help me out and save me some searching time. It would be greatly appreciated. Thanks very much!

hi Gail,

on my first trip to the ENT i met a fellow in the waiting room that i believe had a full frontal tongue replacement... his speech was fine and if i hadn't heard him talk about it with his family, i won't have know it wasn't original.

so that left me with a very positive view of how well these proceedures can work. hopefully you will have a similar experience. i think the results can be quite amazing.

cu,
larryb

Gail, I know I can speak for everyone here when I say I am delighted that you are home and that it went so well. Here is the post about the soft foods cookbook:

http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?ubb=get_topic;f=1;t=000057

I favor ice cream, cottage cheese, yogurt, chicken noodle soup, scrambled eggs, and fruit and vegetable drinks made in the Vitamix. And a LOT of water.

Thanks so much for letting us know how you are doing.

Thanks Joanna and Larryb for your replies. Have sent e-mail to Donna about the cookbook. Sounds just like what I'm in need of! Joanna, what has been your situation with oral cancer? When you talk about your food preferences, you obviously have eating limitations as I do/will too. I'm already dreaming of Thanksgiving dinner and how I'll be able to eat it. Three years ago I mashed it all up together (not including the pumpkin pie!)and if I recall, it was mighty fine! I was later able to eat everything though it was a challenge and slow going, but now with the loss of the rest of my tongue, I wonder what I will be able to manage. I know there is still swelling to go down and I am SO thankful to still be able to taste, that would have done me in for sure!

Gail