As some of the other posters, totally scared of Radiation.
I had surgery (palatectomy, soft palate) and the recovery was a complete nightmare with the tube, panic attacks etc.

I feel better now that it's over.

Could not get a negative margin on the left side of the face

Have trismus already from surgery, but think I am improving. Therapist is having me do exercises; open jaw with tongue rolled, then with tongue down, then push down with hand for a week.

Radiation recommended by surgeon; 25 in 5 weeks. have not seen the radiation Doc yet so thatm may change. I am to get dental clearance first and an obturator.

I am procrastinating as I really don't want to do it, but know that I probably should and will eventually.

Please...don't wait any longer. It won't get more pleasant (the radiation, that is) but waiting can be deadly.

I went through surgery (17 hours) and 30 radiation treatments. The rad was worse for me than the surgery, but it can be done. You will almost certainly be sick, probably sick enough to cuss me out for being so pushy...that's OK by me, as long as you get on with it.

the Doctors don't reccommend radiation out of malice; if you didn't need it, they wouldn't put you through it. You need it, they will help you get through it, and so will we.

Let us all know when you start, and feel free to cuss me out anytime. Just do it!
Wayne

Do it! Do it! Do it! there is so much helpful information on this site from very caring people who've been where you are. Do it not just for yourself, but for the people that love you and care about you and your recovery. My son was originally scheduled for 35 Rad treatments but doctor reduced them to 30 with two healing breaks during the process because of the soreness inside his mouth. Now he only has two more to go. The coping suggestions we received from these wonderful "pushy" people have really made a difference!

TRT,

Not everyone goes through surgery but almost everyone has had the Rad. Have they mentioned what type of rad? IMRT is the latest and is supposed to be kinder. That's what I had but I'm still a newby so time will tell.

They will tell you that the Rad can affect everyone differently but we all experienced about the same side effects, BUT one thing at a time. When is your appt with the Rad Dr (RO)?

I still don't have an appointment date. Probably next week.

I also need to get dental clearance and obturator. This is problematic as I have no insurance, have a lot of large fillings and am afraid they are going to pull a bunch of teeth. Having trouble finding financial assist. in LA.

I don't know what kind of rad it is. It's going to be along the whole left side of the face.

In Los Angeles, I would expect that IMRT would be the norm. I don't know how it would compare to older generation radiotherapy, but it was not a cake-walk.

I had 30 IMRT treatments to the left side of the face as well, from just above my collarbone up to the top of my cheekbone, and from midline on my nose to just of the midline on the back of my head.

The first thing that I lost was my sense of taste, and it just disappeared after the first week. It's back now, but still a bit "off" .

Fatigue, sore throat, mouth sores followed within a couple of weeks as well. Added bonuses were the burns on my neck and ear, in my nose, and of course losing the hair on half of the back of my head, and the entire left side of my moustahe gave me a "distinctive" look.

The 5th week was where things really went downhill for me, and stayed bad until about two weeks after the treatments ended. Since then, it's been steady improvement.

How poorly you feel is completely unique to each person. I'm a skinny 51 yr. old guy, and all things considered I did pretty well..I had one brief hospital stay towards the end of treatment, and never resorted to a feeding tube. Another fellow who started treatment the same week as I did, 15 years younger and 100 lbs bigger, a really sturdy lad, was terribly ill almost the whole time.

The norm is that you're going to be sick. Not likely incapacitated, unable to do anything at all sick, but sick. Plan on it, get your support network working for you, doing the stuff you aren't up to, and concentrate on getting through the treatments, staying hydrated and nourished.

Don't let either of those things slip. If you aren't taking in enough water and calories every day...EVERY DAY....you WILL be sicker than you've ever been before and you WILL wind up in hospital.

That sounds ominous, but it is something that almost everyone else here will tell you. It is a fact that one day of insufficient water or food (especially water) and you will be in trouble. It can be tough when you're throat is really sore, but it is incredibly important too.

Let us know what the Doctors say
Wayne

Talk to the social service department of the hosptial you had your surgery to get some help on financial aid. Even if you don't qualify for MediCal, the state medical assistance program, you can work out reduced fees and payment options if you ask for them.

Pulling healthy teeth is controversial and many feel unnecessary, there's a lot of good information on this site. If the teeth are in bad shape, that may be a different matter but ask them to tell you why if they recommend it.

Good luck with the appointment,
JoAnne

My Local dendist said to pull all. Had second dentist at Rochester Mayo take a look, they ended up pulling 4 bad teeth, I have all the rest. I agree with JoAnn getting in contack with hospital social worker, that should be the last thing you have worry about. Good Luck