Five years ago I had an unknown primary that metastasized into one lymph node in the neck, had neck disecction and 36 treatments of radiation. Last year, they found a tiny tumor on my voice box in the only spot they couldn't get a laser, (can't do radiation, can only do that once), with no metastatis. This one cost me my voice box, gave me a permanent trach and a neck dissection on the other side. For what it worth, I have virtually no scars left from either neck dissection, so it is not always horrible. Anyway here are few things to remember and/or ask doctors about.
Surgery:
1. Make certain that you are in a comfortable position on the operating table. These are long procedures. The first time I wasn't and had back pain for months. The second time they forgot to put the kidney board in the table. If I hadn't complained, I would have had trouble again.
2. After surgery, be certain to support arm on side with neck dissection. Hold with other arm when walking. I supported with a stuffed bear my niece gave to me when I was in bed, riding in car, or sitting. Keeps the drag from the neck. Also prevents pulling in back. Also don't lift anything. I bought a 3/4 lb peach and carried it 5 blocks and paid for it for months. Keep the arm supported for several weeks until you can walk comfortably without feeling like it is going to fall out. Also don't go back to work too soon after surgery. First time I went in 10 days and pulled arm out of wack. Second time I took 8 weeks and had no problem.
3. Get Physical Therapy from a good head and neck man. Helps to prevent scarring and helps head and neck movement. Hopefully they will not have to cut any arm muscle or nerves. Ask them.
4. Don't let them remove any saliva glands unless it is absolutely necesssary. My first doctor did because he said they wouldn't work after radiation so why not. Well the ones I have do work, just not as efficiently as before. Second doctor left saliva gland. Unfortunately I couldn't talk him out of taking half of thyroid and parathyroid. I should have been more adamant about it. Now I'm on thyroid meds because second side didn't kick in because of the radiation. Don't think they have any reason to go after your thyroid but I'd ask. For some thyroid meds are no problem, for others it takes forever to get us back to normal.
5. I used BIAFINE cream on the scars to help healling. This seems to work just fine. I also had mostly stitches, not clamps. I told both doctors that I didn't do scars. The one I had last year, you can't even find the cut.
Radiation:
1. Again BIAFINE. They didn't give it to me until I was so burnt I couldn't turn my head. When reading the instructions, it said to start using before radiation to help prevent burning. Now they tell me. Ask about it, but I would use it on surgery anyway. Much better than the AQUAPHOR they gave me.
2. They may want to remove teeth before radiation. They took 16 from me including some perfectly good ones. Both my periodontist and the cancer specialist who finally made me teeth, say from the xrays they saw, there was no reason to remove those teeth. Get a second opinion if you have any doubts about whether teeth need to be removed. Soemtimes they is trouble with the gums after the radiation so they can;t make you false teeth. I had to wait a year and half. Should have kept my own.
3. Don't know what type of radiation you are having, but you can only have it to an area once. Can they limit the area they are radiating. With my unknown primary they fried me from the tops of my ears to my armpits. Reaosn I now have a trach rather than just having radiation on tiny tumor.
4. Can they avoid radiating your saliva glands or put stents over them?
5. Are they going to give you Salagen or some other drug to help saliva? You should take something.
6. Make sure you get some execise. I froze from 9th treatment on and went to bed for 18 to 20 hours a day until it was over. Lost all the muscle tone in my legs and will never get it back to where it was. Don't do that. It will be fall - go take nice walks.
6. They burnt my tongue so badly I couldn't drink bottled water much less eat anything else but ENSURE. After they burnt it, they decided to give me a stent for my tongue. Don't know if you can get one since part of your problem is in that area.
7. Got thrush so badly that it took 6 months and steroids to clear it. Don't know how to prevent this, but ask.
8. Go to periodontist every two weeks to keep teeth clean during radiation period.
The thing I would stress most is saving the saliva glands because this is what will affect you most for the rest of your life. I would also try to find a pen pal on the internet who went through this recently that you can ask questions.
It makes you feel like your're not allone. The one I found, I'm still friendly with. I'd volunteer but will be Europe for a month while you are going through this (you see they is life after radiation). Also there is an organization called SPOHNC that has a good newsletter and some support groups. They are on the web also.
Best of luck to you and we're all rooting for you.