Hello friends,
My surgery is over (at least the first one) and after spending a week at UK Markey Cancer Center, I am home and recuperating. They removed the floor of my mouth and one third of my tongue. They replaced the floor of my mouth with a muscle graft from my left forearm, and covered my arm with a skin graft from my thigh. The good news is this: Staging is T2 N0 M0. So far, the doctor thinks there is a good chance I may escape having to have radiation. The bad news is that while three sides of the patch they removed were clear on the margins (I think I am saying that right), one side was not. So a week from Friday I go back to the hospital, and they will take out my bottom front teeth, the gum tissue, and depending, possibly part of the jawbone. In approximately two months, the doctor says he will go back in and begin to trim the muscle graft so that I can speak more clearly. Also later, something can be done about getting me some teeth on the bottom of my mouth.

I am doing very well and here are the problems if anyone wishes to comment or add their insights:

1. My speech drives me nuts. I am VERY tongue tied...actually the graft is so huge in the floor of my mouth (the doctor said my arm was unusually "thick") that my tongue is pushed to one side, and I look like and it feels like I have TWO tongues. Anyone with experience here?

Actually...I guess that is all that is bothering me. My spirits are VERY good, and I credit this forum with a lot of that, as when I found you all, I felt someone finally understood and could talk to me from first hand experience.

Hi jj,

Nice to hear you are doing so well. Everyone hear loves good news. Your spirits seem quite high. A symptom that you will do well on your journey.
I can't give you any advice on the graph problem. I had a pech muscle used to rebuild my throat. My speech has improved in the 7 months post surgery but will never be like it was, A small price to pay.
Your staging must have been uplifting. I was a stage four SSC on the right tonsil and surrounding tissue. I had IMRT radiation 10 weeks after the surgery. Someone from this site told me to measure your progress in weeks & months, NOT days. They were right on. The healing and getting your life back is a slow process that can't be rushed. But believe me IT WILL GET BETTER.

I'm sure someone with similer surgery will answer your post and be able to give you the info you are seeking. In the mean time. Rest and heal. Make sure your getting the correct nutrition and drink allot of water. I kept a diary of my food & liquid intake. I dropped 30 lbs. in 2 weeks and gained it all back in 6 weeks using a feeding tube. I added carnation instant milk to my Jevity for the calories. I also inputted allot of Gatorade and water. A nutritionest should be part of your team. Good luck and keep your head up, Dan

Hi JJ! I want to commend you on your positive message, your spirit is truly inspirational!! I hope the worse is behind you. I had almost 1/2 of my tongue removed and replaced with the muscle in my arm (they call it a flap), it kind of looks like two tongues cuz there is a small split in it in the front. I had speech therapy which really helped. I had two positive lymph nodes removed also and 35 radiation treatments. I thought all along my tumor was stage II, just found out that it actually had been upgraded to stage IV due to the nodes. I am grateful to be alive, it will be two years since my diagnosis on May 10th. Keep Looking Up!!!Your attitude about all this is inspiring!!!God Bless You!!!!Will keep you in my prayers!!!!!!!!!!

Hi, As part of my reconstruction I had the forearm flap you are talking about.After surgery I had that "pillow effect". My ENT also said what yours did trim later if needed. It settled itself to what feels like my old floor of mouth, there was no need to trim. It seemed when I could eat and talk nature took its course and put all in place. I talked rather odd for awhile too.I have pieces of femur,wrist, shoulder, and skin grafts from both legs in my mouth, I often say everything but my foot and I can do that myself!It is good to keep positive and keep a sense of humor.Good luck to you.