Hi all! Just wanted to some opinions on this and to see if anyone else has experienced it. My husband is almost four years post diagnosis. Within the last two weeks he started having trouble opening his mouth. Looked inside and on the side he had tonsil cancer on, on what I would guess would be called the arch of the soft palate, it looks really stretched tight and white. He went to see an ENT today and they told him it looks like fibrosis from the radiation damage. Do any of you have any knowledge of this and what should be done to help? Thanks!
Julie

First of all congratulations on 4 years of survivorship!

I only have 14 months myself, post Tx, but my radiologist warned me about a permanent "texturing" of the muscles in the radiation field prior to treatment. There is definitely, what I would suspect, permanent damage in certain areas. It doesn't seem to be improving so I am assuming that it is part of the "new normal". I have also noticed that the area in the back of my throat is not a dark pink as it once was, tending to be lighter, almost white. I also no longer have a Uvula - it was toasted during the radiation. I don't have trouble opening my mouth (my wife would love to hear me say that!) but I have always had some pain while yawning.

I also had IMRT which may have lessened the damage to a more tolerable level.

Mark has over three years maybe he has some thoughts on this.

Before treatment began, I had to sign a waiver stating fibrosis was a possible side effect of radiation. At that time, I used google to search for "radiation cancer fibrosis", and did find some material that helped me understand it more. It is was what Gary explained, but a google search may go into further depth.

Sabrina

Thanks Gary & Sabrina. Have you heard of any treatments that can lessen the severity of it? It is not real bad so far, but since it just showed up four years post treatment, if it continues to worsen I am worried he will have difficulty eating.
Thanks again!
Julie

The only thing I've heard of to help mitigate this is stretching the muscles that were radiated. I'm coming up on six months post-treatment and I can feel the muscles in my neck and jaw trying to tighten up. I stretch these muscles several times a day.

To stretch my jaw: I simply open my mouth as wide as it will and then stick my tongue as far as it will go. Of course, this looks silly, but I don't care.

To stretch my neck: While keeping my mouth closed I look up as far as I can. Then while still looking up, I look to the left and to the right. This is usually painful, but I really don't want to lose any more mobility in my neck.

Hope this helps.

-Brett

Brett,

Thanks for the instructional post! I am doing them in between typing and I will remind myself daily and often through the day. I would add the isometric neck stretches. Place your hand on the right side of your head and push your head towards your hand for 10 seconds. Repeat on the other side, then repeat with your hand on your forehead and the back of your head.

Ed

Brett & Ed,
Thanks for the instructions. I remember when we were going through radiation there were swallowing and mouth exercises he had to do everyday, I guess doing those would be good too.
Thanks again! Julie

Hi Julie,

I am 10 months post-op and 7 months post IMRT radiation. My neck muscles seem tight most of the time. I also have a restricted mouth opening. I can open to about 30mm. Normal mouth opening according to my dentist is 50mm. I open my mouth as far as I can and hold it for 6 to 10 seconds just to keep what I have. I do this several times per day. Driving down the road if anyone looked it must look odd. Eating is getting easier but I still have trouble swallowing. Have to keep a bottle of water handy to help flush the food down. I tend to eat alot of soft foods and I know I'm lighter than when I was using the feeding tube. I just can't input the amount of calories I was when using the tube. I also had physical theraphy help with the mouth opening. Keep stretching the muscles everyday and it shouldn't get worse.

Dan