I am new to this site and have read some of the forums and this looks like a good place to both give and receive support.

I was diagnosed with stage 1 tongue cancer two years ago. In Dec 06 I had a right side tongue resection with some lymph nodes on the right neck renoved. Margins were clean and all tissue removed from the neck was clean.

In Sept 08 I had a recurrence of cancer of the tongue but farther back on the underside of the tongue. A second tongue resection with clean margins was done.

I am now getting ready to undergo radiation therapy and after I have read more postings I will probably have some questions for everyone.

For right now I just wanted to say "Heh". That's how we say hi here in the south.

Hi Bill, Welcome aboard! This is the best forum to get answers to any all questions. Good luck with your future treatment. Semper-Fi Bob

Hey to you too Bill-G.. welcome to the best people on the internet and the most knowledgable. You will get about any question answered. Our leader in here is Brian Hill and if he doesn't have an answer for you , he will find it. This is a great plce and I want to wish you all of the best from us yankees LOL

Hi Bill,

Welcome to our boards. Lots of people with lots of different experiences here but all more than willing to share. It's a good place for both information and support. Best of luck.

Susan

Hello Bill and welcome to OCF.

When you get time, please add some info to your signature so its easier to respond to yoru questions.

Sorry to hear about your recurrance. Something that helped me get thru mine was knowing I beat it once, I can do it again.

Your post said you were going to start chemo/rad. Several things to know going into it..... if you are able to eat, do it now and eat like crazy. Dont worry about calories or gaining weight, you dont want to have regrets later. As long as you can eat, get all the spicy stuff in now and steaks, bread, meats, and sandwiches even a soda. Those things will be difficult if not impossible for a while later. Also do stretching exercises to work your jaw, drink everday (dont mean booze). Swallowing is an important function you dont want to have trouble with later.

Feel free to ask any questions that may come up. Also there is a ton of info on the main OCF pages with a good search functin availble there too.

When will your radiation start and have they discussed chemo options with you?

As Christine said, eat now like you want to gain 150 lbs. Eat all your favorite things. During Tx your taste will go bye bye and so will your saliva so now is the time to stock up on eating memories.

You will find this site to be a valuable asset in your war against th1s cancer.

I couldn't make it through the mask fitting. I tried the first day and lasted about 10 minutes. Next day I took valium and couldn't last 1 minute. I completely panicked. The readiologist said he can't do anything for me unless I can keep the mask on. He did not offer any solutions. I am so scared when I put the mask on that I can'stand it. I am thinking about going to a hypnotist or a therapist to overcome this fear but I don't know if that will happen soon enough. Are there any other solutions that people have tried?

I can barely make it through my normal quarterly CAT scans because of the anxiety.

Bill,

I wish I could help, but anything I could say would involve common sense, and phobias, as we all know, don't respond to common sense, and it sounds like that's what you have. I hope someone else here who had the same problem can help get you through it, because your life depends on it. You absolutely must find a way to conquer this fear in order to conquer the cancer.

I'll be pulling for you. You can do this.

Lani

We pumped Linda up with Ativan. Don't know if that will help since you already tried vallium. I have heard others mentioning using music and things like that. Good luck!


P.S. Welcome to the site!!

Bill,

First off you must wear the mask or your precisely aimed radiation will not do the job it's designed to do and that is kill the cancer. So you are putting your life at great risk since this cancer is extremely aggressive.

That said, you now must dig as deep as you can within yourself and just do it. You really don't have any option unless, of course, you want to give in to the cancer which will kill you in about a year. It's was not pleasant at first for any of us and granted some have a worse time than others. I will say, like just about anything else, you will become accustomed to it but you have to do once to start to get use to it. Some have gotten meds to help them and I found listening to loud music did the trick for me. Even when I didn't like the song I would count to myself to see how long each position took. If you're like most of us you will have appx 35 treatments with each lasting less than 15 minutes so come on tell yourself "I can do this!!"

Keep your eyes closed -- Perhaps being led in wearing a sleeping mask to blind you might help.

Otherwise, see if you can find a therapist.

For me and I am as anxious as they come...I have a severe anxiety disorder although never had radiation and that experience...For me even a cat scan I found myself getting anxious...the only advice that worked for me is to detach from myself and concentrate on breathing...follow the breath in and out...or focus on a part of my body and breathe it does help for me...

It's mind over matter.

i had to have them stop for a couple minutes when having the mask made. was all i could do to make it thru but i did it. ativan is what they use at the UW to help with it ... and maybe it works better than valium for this type of thing so i would try it if i were you. i would also speak to your oncologist and see what they suggest i am sure you are not the first and will not be the last to not make it thru without help. just keep trying everything until you make it thru.

Does the mask have eye holes and nose holes so you can see and breathe? If not, ask them to cut holes in the mask. For me, the simulations lastest much longer than the actual treatments. Simulations ran about a half hour while treatment was 5 to 10 minutes. As Jim said, it is mind over matter. Ya gotta do it.

Tare care,
Eileen

I had a similar problem. It was shortly after exploratory surgery on my throat to find the primary so my throat was still swollen and I had a hard time exhaling. About 1/2 way through the fitting I couldn't exhale at all and panicked. We worked with repositioning my head to get a clear airway and I managed to dig down and get through it. They also cut the chin away on the mask so it didn't feel like pressure there. Between those adjustments and valium I got through my 35 25 minute treatments with a few anxious moments but, as has been said, soothing music and counting the positions also helped. Work with the techs to find what's comfortable for you. The alternative is not, imo, acceptable.

Bill...My heart truly goes out to you as a fellow phobia person...closterphobia and severe anxiety disorder...As others are saying the mind is a powerful powerful tool either it is you friend or your foe...the trick is to make it your friend..I understand from the depths your fears arise...I am the same way thats why the suggestion of focusing on your breathing and I added humming to myself although not sure if you can do that during radiation treatments....I had some tests done where they did scopes I was relaxed during the first part but the moment they tried to go down my throat I paniced and they had literally force me and hold me down...I had nightmares for months after of drowning...having the feeding tube gave me the same sence of being choked...although I knew logically that it wasn't hurting me I could not let it go... It is a matter of trusting who is working with you...I made a connection with my nurse practicioner and well when I was having trouble with my feeding tube after surgery I asked for her...when I saw her and her determined eyes working on my tube and not letting anyone else do what they wanted to do (take it out and put it back in with the aid of an xray machine) I relaxed and drifted off...I know this is going to be the hardest feat to do in your life but believe me you CAN do it! I have not thank god have to have radiation and a mask and if faced with the same issue I know I would be in a spot...Try to learn to trust relax.. what ever it takes for you....Please don't give up...When all is said and done you will have so much more to be proud of also conquer fears wow...like I said for me it is a matter of detatching from myself or concentrating on something focusing on something other than what is scaring me... and trusting you will be ok and you will!!

Persistance pays off...hypnosis, accupuncture, meditation anything that may work but keep trying!!!

Bill, I to have had a hard time with severe panic attacks with the radiation. My RO gave me 1mg. Xanax and I take it 45 minutes to 1hour before my 25 minute treatment and it has really helped. Now don't get me wrong I still have a problem with my mind running and wanting to panic every day but I keep telling myself that I have got to do this if I want to live. And I definately do so I just keep trying to keep myself calm and I am working through it. So far I have had 18 radiation treatments and 4 chemo, The radiation treatments have gotten a little easier over time and I explained to them that I wanted to make sure I could let them know if I was having a problem during radiation and they told me that all I would need to do was to raise my knees up and they would stop the treatment and help me. That has only happened once so far. I try my best every time I go to make it easy on the worker as I can and in turn they really go out of their way to help me as well. Good luck and I will be thinking about you and hoping peace will pull you through this. You can do it! I am also from Ga. Angel

mI think the fear is like being afraid of the dark when you were little. The more you had to do it, the easier it became.. You sure have my feelings following you. Good luck and you will do fine.

Bill,

Don't feel badly. That was a major concern for me when I had my treatments. I honestly prayed that God give me the strength to make it through being put in the mask and I asked others to pray for me about that as well. I know it worked, because I honestly fell asleep a couple times during my treatment. My treatments usually took about 20 or so minutes to complete.

Dianne's advice is good too. Make a connection with at least on of your nurses. We had a signal worked out that all I had to do was move my foot and they would come in if I needed them. Because of the prayers I mentioned above I never had to do it. The nurses made sure I knew that it was not a problem to stop if I was uncomfortable.

Maybe just having that reassurance that you can stop will help you if you get a signal and everything worked out.

You can do this and make it through!

Cindy

Thanks to everyone for their replies. Part of the problem may have been that my radiation oncologist was pretty heartless. I have complained to the radiation chairperson and I will start over with a new radiation oncologist. I am also trying to find a therapist or pschologist to talk this over with. This phobia keeps getting worse all the time and I need to deal with it. I will let you know how things turn out.

Bill,
There should be a patient navigator, a medical social worker or an omsbudman where you are being treated. These people can help you with this. Maybe the new RO will be helpful.
For now, I suggest that instead of trying to work on your claustrophobia which could be along process you should concentrate on getting through the mask and radiation. The suggestions offered by those who have been through this issue seem to be very good. Perhaps the best for you would be the nose and mouth holes.
There is a difference between overcoming a phobia and controlling it. I was terrified of fire and still am. In college I made my own therapy which consisted of having the courage to hold a lit cigaret, putting one in my mouth after a friend lit it, and finally lighting my own. This was not an over night process and now I can actually strike a match but am still shakey when one begins to burn close to my fingers. I get that physical internal shaking even when someone else is letting a match or cigarettte burn down to what I feel is a "dangerous level." I have found what I think is the source of this irrational fear but that is irrelevant to the fact that I will probably always have this phobia.

Another thought: Why don't you make your own sign(s) with some pictures such Munch's "The Scream," Darth Vader, Houdini ,... and/or some slogans or phrases that you may think would help.
Good luck,
Malka

Malka,

Everyone gets "shaky when one begins to burn close to my fingers". That's normal so maybe you've overcome it.