My husband has stage III tonsil cancer and is just starting his treatment. He's having a problem with panic attacks because of claustrophobia with the mask used for radiation. Has anyone experienced this and what can help?

Deborah - The claustrophobia is not uncommon. He should tell his radiation oncologist right away. Have him ask about a drug named Ativan. Its a very polite and non-dramatic drug that might be really helpful. I used a lot during my treatment. Encourage your husband to ask about and USE the drugs available for comfort and sleep. I can tell you that the mask is pretty scary - I hated it. Encourage your husband to join us here too. I'm glad you posted, and please keep coming back. There are MANY wonderful people here who know how to help you both. Be strong. Tom

Boy does your post bring back some horrible memories! I was not prepared for how the mask would make me feel. It TERRIFIED me the first week, I dealt with it how I deal with most things, quietly and with no fuss. I counted the entire time I was in the mask. After a week or so, I got used to it, became more comfortable with it. By the last few weeks, I was totally relaxed while in the mask.
I hope your husband finds a way to conquer his fear.
Minnie

Ditto! I hated that thing & with nausea from chemo it was interesting. I would have the techs turn up the music loud & just rock out & retreat mentally from the situation. At first it was pretty tight, but by the end of the 7 weeks it was pretty loose from all the weight loss. He has to just find a happy place & get through it. It's not easy just necessary. Erik

I just took Zanax and slept through most of the treatments - it'll loosen up as he loses weight and it won't be so bad. He'll get used to it. My main fear was getting sick with it on but it never came to pass. The techs watch you constantly on CCTV and can get you out of it in a hurry if need be.

Like EriK I brought my own CD's and that helped a lot too.

goodmorning deborah,
all of these posts bring back a flood of memories about the mask and it has not been that long ago for me 11/01/05 thru 12/16/05 so my memories are pretty vivid, I too had anxiety attacks and like Tom I relied on Ativan, it is a anti anxiety med, however that being said Ativan is a powerful drug and your husbandmay experience some withdrawl problems as I did, I ended up finishing my prescription after I was finished with the mask, when I went in for surgery in January of this year I had to deal with some slight withdrawl problems, I certainly did not need that. Deb don't let all of this scare you the Ativan is managable as is the mask as minniea says. I kept that damn mask when I was finished, I thought that I might use it as a teaching tool for my high school students or maybe decorate it every christmas to remind me how cigarettes screwed me out of a christmas. Hang in there deborah, your husband can and will get through this.
always lenny

Count me as another one who absolutely hated the mask at first. Ativan helped (though I almost always took just half a pill because they really wiped me out), but I never ttoally got used to that mask even so. Especially when I was so nauseated every day from the amifostine I was always scared I'd vomit in it (but I only once had to signal for them to let me out of it so I could vomit--the rest of the time I managed to avoid that though I'd often vomit as soon as I sat up to get off the bed).

I had this little imagery/metaphor thing I did where I'd imagine the mask was like the helmet of a suit of armor and served as my protection as I went into fight the battle against the cancer. I still think it's a pretty good metaphor--and if you've ever seen masks from old suits of armour, they look like they were pretty nasty things to wear too!

Nelie

One thing my husband was always concerned about was falling asleep in the mask and then waking up (still in it) and -- for a moment not knowing where he was-- having a panic attack. For that reason, even though he is somewhat claustrophobic, he stopped taking the Ativan after a few days Even the 1/2 tab made him very sleepy.

What we did was take CDs to play -- usually loud blood-and-guts classical music or rock -- and he would lie there with his eyes closed tightly thoroughout, concentrating on the music. After a few weeks, however, he got used to the whole ordeal and towards the end, actually would fall asleep -- he told me he enjoyed the chance to rest -- and he never had a panic attack.

Maybe give music a try ...

Gail

DRUGS---Valium is good to relieve anxiety and there are other drugs as well communicate your panic problems to your RO...
Darrell

While Drugs may help some, I had this song I chose in my head ( a song very close to my heart) and I started mentally singing it at the sound of the start of the radiation machine. I knew just how far I would get in the song and that was the end of the days radiation...Time passed quickly during treatments with that song and I buried the treatments in the back of my mind but the song lives on daily....as an old reminder that I am still here and kicking 7 yrs later...

Deborah,

I hated the mask at first also. I have it mounted now on a nice piece of wood and I have it displayed on a wall in my office. It makes a very good conversation piece. It's kind of my "badge of honor".

Anyway, when I first had my mask made it was solid. I almost had a panic attack while they were making it. I asked the tech's to cut out the eyes, nose, and my mouth area. After that it was not so confining and I was able to make it through all of the treatments.

I would lay there and listen to the "machine" work and imagine all of the cancer cells that it was killing. That was my focus.

Regards,

John

Hey John, I have my Mask too. They asked me if I wanted it to put a plant in...(think they were joking, of course) but it is my "badge of honor" too. I watched them soften it in a skillet filled with warm water. Then, they put it over my face while warm and shaped it to my features. They cut out eyes, nostrils and the mouth as I had to bite on something they called a lollipop....to keep my tongue from moving during the treatment. While it is all well behind me, and I was never a smoker, it was quite an experience to have to go through. We are all brave souls who have been to "hell" and back and a lot wiser for it all...Prayers to all, Flo

Thank you so much to all who responded. We just returned from radiation and chemo and he did fine. As you suggested he took ativan and they cut a hole for his mouth and that made a world of difference. He has a long way to go but at least he's on his way to being cured.

I want to make mine into a "Chia Pet" but I haven't figured out how to glue the seeds to it yet. It's pretty slippery stuff.


Ativan is actually good for nausea too. It can be placed in a suppository (like compazine or prep H) and applied rectally and also under the tongue, sublinglily.

What interesting posts. John had a really tough time with the 1st 2 tx. in the mask, but he decided to count each buzz from the machine and by the 4th tx. knew how long each shot would be and where it would move next. He just counted his way through every treatment. We also have his mask. Our 22 mo old granddaughter loves to put it on and run around yelling "BOO". Deborah, I am pulling for you both as you go through this. Amy

My 7 children and (at the time) two grandchildren, husband, came with me to my last radiation appointment. The rad techs offered me my mask and I FORCEFULLY threw it in the trash can right then and there. I hated that thing and had no desire to take it home. I also didn't want my kids to see it, ever.

I'm surprised these masks aren't conidered hazardous waste considering how much radaition they went through. I wouldn't have wanted it, but no way was the hospital allowing mine out the door. My sessions only lasted 5 minutes but I suffered through every one of them. Years later they tried to do an open MRI on my head which required an open mask. I freaked out. I never got used to it.

Eileen

I got my mask as a souvenir. I still kind of see it as armour in the war against the cancer.....I can't really see hanging it in my office or mounting on the wall anywhere, though. One of these days I'll decorate it somehow and then maybe....love the chia pet idea!

oh and by the way, I get so annoyed at my RO when I hear other people got to have the mouth opening cut out. I *begged* for that because the mask pushed my lips against my teeth in a way that I'm sure created worse mouth sores than needed to be there but my RO said they couldn't do it. It also made the whole thing much more claustrophobic....

the good ol mask.........it was so unpredictable as some days it fitted fine & i didn't have to go through any anxiety attacks but other days it was so tight that i'm surprised i didn't faint..

towards the end of the treatment i figured out that the way i tied my hair actually made a difference since the mould was done with my hair loose....

i didn't take any medication as i wanted to imagine & visualize the cancer cells being destroyed...some might think it's silly but i'm strongly in favour of mind over matter & placebo effect theories....

some meditation techniques like focusing on your breathing as it goes in & out assists in relaxation & calming down but ofcourse in that scary environment it's just difficult to focus on anything else....but it's still worth giving a try

I just read through all of these posts and didn't see any mention of having your wrists bound to your ankles while in the mask and receiving treatments, which is what they do to my husband. Is that standard?

His treatments last about 15 minutes, and they have done new CT scans twice already, necessitating the day after the scans are done to be on the table for what seems an interminably long time while they do "films." The first time that lasted an hour. Tomorrow they will be doing films again. I hope it doesn't last that long again. He will be taking valium tomorrow but wasn't given the opportunity the last time because they didn't tell him ahead of time what would be taking place. I tell him to meditate but I don't think he does. He is too afraid of getting sick or coughing while in the mask. "Brave" is an understatement when it comes to all who go through this treatment. I finally actually saw my husband on the table the other day for the first time while he was in the mask, right after he had a new one made. I was very nervous to even see him in it!

Yes, my wrists were bound also during treatment. I was fearful of it until the tech showed me that all I had to do was pull my knees up and I was free.

"Wrists bound to your ankles" - maybe your rad tech was a dominatrix ;-) My rad techs were very cool - even put a pillow under my butt when I got so bony from losing the 60+ pounds. They also had a triangular pillow for under my knees and lots of blankets because the room was kept cool because of all of the equipment.

They usually do the films weekly to double check registration and accuracy. This entails removing the secondary collimator (or applicators) or MLC if you are getting IMRT, and placing a special x-ray applicator to the LINAC head accessory slot.

Your nose, by the way, is typically the primary geographical reference point to insure proper mask alignment (along with the tatoo) and a few "Post-It" dots with crosses on them, scotch taped to the mask that they align the laser beams to). Real high tech.

You do have to take note of the plastic headrest though - it can hurt a lot if they reverse it or give you the wrong one. ALWAYS check the computer monitor to insure that your name is on the treatment plan screen. Some folks here have been "treated" for prostate cancer.

There are slight variations in how masks are done. You don't have to worry about them being radioactive - they use ionizing radiation which is a non issue when the machine is off. Older machines had a retractable device called a "beam stopper" and it could get a little "hot", but I haven't seen any machines lately that even had a beam stopper. Also radiation for H&N cancer is typically in the 6-12 MeV range and they have LINAC's that go out to 20 MeV (they can actually get some neutrons in those power ranges and the techs have to wear 2 film badges or dosimeters.

I used to invite my friends in to watch them "bolt" me in just to watch them freak out! Hey the thing saved my life. It's only 6-7 weeks - about the same as boot camp.

How do you know all that technical info?! So are you saying that my husband having his wrists bound to his ankles is not typical? Anyone else besides Minnie have this done? He asked them if it was necessary, and they said it was, to make sure he didn't shift. Maybe it is because he is getting XRT and not IMRT?
I think he could handle it a lot better if it weren't for that.

Good lord, having my wrists bound to my ankles would have *really* freaked me out. They gave me a foam (somehwat squishy foam) "donut" to hold on my belly, one hand gripping each side of it and that's how they kept my hands in one place. OK, now I'm NOT annoyed with my RO but glad I had that instead of binding my wrists--it's interesting how much these things seem to differ from place to place.

If I remember correctly, and it's been almost three years, it was explained to me that my feet pulling my arms downward pulled my clavicle out of the "line of fire" of the radition. I had two wrist bracelets that were hooked together by a piece of soft material. The bracelets were put on my wrists then the material was looped under my feet, my feet pulling it taut. I was never "restrained" as I could EASILY pull my knees up and release my hands.

Oh I see. That makes it not sound so bad.Now I'm wondering if it's something they should have done. I do recall the radiation techs fiddling around with my shoulders quite a bit each time they positioned me.

Now that I'm recalling the details more, I remember that they had these little plastic thingies that fit into the sides of the radaition table and could be locked in place and they'd push them down on my shoulders to hold them in that same position--that plus positioning my hands on the donut must have served the same purpose.

Yes, I do remember now that you mention it Minniea, being told at some point that they did that (bound his wrists to ankles) in order to pull his shoulders down so as to avoid the radiation. I don't think it is something he can release himself from though, although I don't want to bring it up to him by asking, since he has "accepted" it the way it is, and if it can't be changed, I don't want him to think about it any more than he has to. It still seems like there should be a better way, such as what you describe Nelie.
Michele