Hello I have been told that I have mucoepidermoid carcinoma and have had surgery already and am getting ready for radiation. I am scared to go throught with it.

Angie,

Scared makes sense to me. My best advice is to learn as much as you can about what's going to happen. Here are a few things I would point out (I finished 5 months ago):

1. The mask fitting was weird. I just wasn't prepared. In general, the put the thing on you and it shrinks to fit your face. It's hooked to the table, so you can't move. It didn't hurt, it was just weird. I think I would have been OK if anyone had told me. I did get a little nervous, though.

2. I was a sort of nauseated one day and was really afraid I would throw up in my mask. I never got close, but I was happy to hear that it had never really happened and that they would come and spring me as soon as I lifted my knees.

3. I was allowed to bring my own CD's. That helped a lot.

4. I had some sunburn-like burns on my face. The cream they recommended kept in in check pretty much.

5. I got a real sore throat and ended up with a PEG tube at week 4 and kept it 'til 6 weeks after. I started using it for meds, food, everything. I'd recommend getting it done while you feel up to it. I ordered drip bags off the internet, much easier than syringes.

6. The stuff about feeling bad even after radiation is true. Plan on it.

7. Tell your docs how you feel. I was blessed to have relatively little pain, I think, becuase I was honest w/ the docs and they gave me pain meds.

8. I had a pretty bad bout of mucositis. I ordered Diflam from an internet pharmacy in New Zealand and it helped a lot. (Note: I have lots left over if anybody needs it).

9. Ask questions here: Faster than waiting for the doc to call back and often better.

10. If you haven't been to a dentist who specializes in this, go, now.

11. My worst side effect was mucous. Thick, stringy, choking mucous. It sucked. Fortunately, it only lasted a month or so (Not pleasant, but death lasts longer).

12. Every day, I told myself "Suck it up, son, because it's going to be worse tomorrow." I was right for 8 weeks, then I started noticing the difference was positive. It sounds weird, but it helped me.

13. Would I do it again if I had a remission and it was a possibility? You bet your @ss I would. It wasn't the most fun I ever had, but it wasn't as bad as I feared.

They have to damn near kill you to kill the cancer. You're the stronger one. You can do this. We got your back. I'm sure folks will add to this list. My memory ain't what it used to be...

Clint

You're not alone angie88...I'm new and just as scared, however, hearing what others have to say and reading some blogs here has helped some.

I'm also trying not to focus on the painful part so much.

Angie,

The radiation is definitely worth the temporary pain and suffering. I am 4+ years out now and have no sign of cancer returning.

If doing the treatment has you so scared that it is making you anxious, etc. the Doctors can give you meds for that too. Be very open with your doctors because they deal with all the problems associated with Radiation treatments on a daily basis.

Take care and fight hard!
Jim

Hi, angie,

I finished my radiation about 6 weeks ago. It was scary, but not scary enough to not have the treatment. I won't go into a lot of details because teamshrink's description covered my experience quite well. Ask for some anti-anxiety meds. Ativan (lorazepan) really helped me get through it. There are unpleasant side effects of the radiation, but you can get through them. You will find a lot of help with that from the postings on this forum. Good luck, and keep us posted on your progress.

Angie,

The fear is much worse than the treatment - that was my experience.


As you get into a routine, get to know your doctors AND nurses, start having success getting medications for side effects, see the same people everyday going through treatment, etc, the edge will come off your fears.

If you have someone to go through this with you as a caregiver, that will be helpful.

My experience was not pleasant, but it wasn't horrific either. And of course, you've got a lot of support here.

Best wishes,

Chris

Angie88 hello and welcome. The best thing I did was find forums especially this one and ask questions. It's just like the dr.s will tell you, everyone has a slightly different experience or the timing of side effects may be slightly different. If you ask the questions and read posts you kind of know what is coming or things you can do for side effects ect. For me the knowledge came from combined efforts of my dr.s and these forums. No matter how hard I tried I never asked all the questions I wanted to when I seen my doc. I always had to read posts or ask new questions.

The mask was scary the first time they put it on just because I really didn't know they were going to put it on right then, and I had just had a tonsillectomy. I was afraid I would start choking and I sure didn't want to go through that. I didn't choke and never had any more trouble. I really didn't have any radiation side effects fo r 3+ weeks so it kind of gave me plenty of time to get a little more educated.

Chemo side effects started the week after the first treatment and they were a little tougher. You can do this. It is scary and overwhelming at times. What works for me is just taking it a day at a time and one treatment at a time. The only thing I set an expectation on was that once I started that there would be no stopping until I was finished. I think alot of people will tell you it is difficult to start again if treatment is interrupted. I just didn't want to have to take any time off from my treatment so I was very careful. Especially about who I was around and large crowds.

If I can share anything it's how important it was to me to not try to please everyone by visiting with them during my treatment. I talked on the phone alot and e-mailed alot but I stayed pretty isolated just because I didn't want to get sick. The only exceptions were my wife and little boy. I didn't get sick. For the most part my treatments have been bearable. You are in my prayers and I wish you luck. My biggest fears were of the unknown and there is a wealth of experience here to shed light on most all of the unknowns I had. Hope it helps you. Lee

Thank you all for your information and advice. I had the mask made but need to do it again!!! My tongue gets in the way from the surgery of my soft pallet so I need a mouthguard and than the mask done. And it really did suck the first time so I hope this time is better.

I made it throu my second masking and only took me 4 sedative....I have to have something in my mouth now to hold my tongue down. just something else to make me more uncomfortable. Oh well life goes on...