I haven't seen anyone mention this process.
Is it uncomfortable to get this made and does it take long? I realize how important it is to have it fit well.
I know this is going to be done, but haven't met with the oncologist yet to ask about how it's done so wanted some input from you here ahead of time.
I want to, hopefully, give my husband some reassurance that it won't be to uncomfortable to get this done.
Thanks.

Here's a picture from someone's website Link

I had my mask fitted a couple of days ago. There was no pain. I don't mind feeling a bit confined, so it was no big deal. They warmed a sheet of plastic and two people spread it over my face/neck. Then they clamped it down until it was hard. After that they injected me with a contrasting solution and marked the mask with what I can only think of as aiming dots.

The mask is no big deal it's a little creepy being immobilized at first but you'll quickly get used to it. A tech made my mask and it took about 10 minutes or so.

OCF has a good section about what to expect: http://www.oralcancerfoundation.org/facts/radiation.htm

As everyone has said it's no big deal to make except I was on the table for an extra 45 mins waiting for the doc to get back from seeing a patient. That 45 mins seemed like 6 hrs.

Later that week they put the finished product on my face to "set me up and make adjustments if necessary" and they forgot to tell me that they were going to clamp me down and leave the room. When I was alone and clamped down for the first time it was creepy and I could even feel my heart pounding. I got over that and got used to it real fast....I had to.

To me it was no big deal initially. Getting fitted was a little uncomfortable because they didn't tell me enough about the process.

After 15 or so treatments I absolutely hated it and the whole process of IMRT. I had to learn not to focus on it. I counted the seconds the IMRT was on a certain area or closed my eyes and recited songs or prayers in my head. I knew this was a necessary step to fight this battle, so not doing it wasn't an option.

I kept it for a souvenier, my son who is 7 puts it on from time to time to and tries to scare me. If he only knew how much I dislike it because of what it represents, but I can't bring myself to throw it out.

Tim

Some folks like to keep the darned thing -- On the last day, when they asked me if I wanted mine, I just grimaced and pointed at the wastebasket -- They all just grinned!

One day, after an amifostine treatment and a bad toothbrushing morning, I was feeling a bit nauseated -- I asked the Microwave Room staff what to do in case I barfed and had them take me through a dry run of getting out of the mask, just in case, which made me feel better about the whole process -- Kinda like the reverse of gas mask drill in the service!

They will likely also tattoo a tiny dot on your chest (less pain than a typical injection) as an aiming dot for the process -- One day, I showed up with one of those decal tattoos and gave them all a laugh (I tried to find one with cross-hairs, but no luck).

There are some people that had bad experiences with the fitting and I was certainly one of them. NO ONE had prepared me for what was going to be done and being bolted down and restrained that way had a horrible effect on me. I was upset for a couple days about it. My first day of radiation was terrifying because I was already scared of the mask. I used simple counting to get me through it. I counted in my head. Good news is that, by middle or so of treatment, I had no anxiety over the mask. I DID throw the thing away at my "ringing of the bell" ceremony though!

You guys are going to scare the crap out of this gal. I slept through many of my radiation treatments. I also made up a CD of my favorite tunes which I brought with me every day.

Gary,

I have to disagree with you on this.

I was more upset that no one had told me what they were going to do than what was done to me.

One of the most valuable things this site does is it prepares us (or at a minimum makes us aware) for what lies ahead and that can take the fear of the unknown out of the picture.

JMHO

When I had my mask made they told me in detail, in advance, everything I wanted and needed to know.

I didn't care for the "idea" of being bolted down, especially with the bouts of nausea. They addressed that pro-actively the first day with the mask, by going through the entire drill of removing it rapidly in case of vomiting or panic attacks. The reality was not that uncomfortable

Knowing that they had a plan, and were prepared for any problems I might have, made it much easier overall. In reality, it's not really all that different than a mask you may have worn as a kid on Halloween. I kept mine as well; it was an important symbol to me of my journey
Wayne

I would think that folks who go in for Sado-Masochistic "activities" would be well-prepared for this <big grin>.

They didn't prepare me for this, but I am a trusting soul (to some extent), and was still recovering from my surgeries, so I just went along with the whole thing. In fact, they had some name for the session that implied I would be in a conference around a table (Development of Radiation Plan, or something like that...).

The only thing was, when two techs had me down on the table for some sort of trial run and the mask fitting, they mentioned that they would be doing the tattoo later and even showed me the kit; I said "Why not now, while we are all assembled here, you have the kit, you have the Nuke Machine aimed and you have me strapped down so I can't escape...?". They looked at each other, opened the kit and had at it!

I didn't get a tattoo. I told my college student mom was getting a tattoo (very sore subject in our house), but they marked the mask instead. If they give me the mask, I will put in near the casts of my teeth they made so they could create my flouride trays. They all look creepy enough for Halloween.

We are, indeed, all different. John acclimated to the mask routine very quickly, but to this day, if the CT\Pet machine is a small tube, he will refuse to get in and walk out of the room. Amy in the Ozarks

My mask experience was simlar but the cut holes for my eyes, nostrels and mouth. Plus I had to put the "popsicle" in my mouth during radiation. It kept my mouth and tongue exactly in the same position during treatment.

I also got the "strap" to pull my shoulders out of the way during the radiation process. This is accomplished by tying the strap to a wrist running down below your feet with your knees slightly bent and up to the other wrist. Then by straightening you knees it pulls down on your arms, shoulders, etc. Fun times!

Let's hope we don't scare her, as Gary is worried about, because I would hate to have that happen. I just know that I handled everything they came at me with in a very dignified, calm manner............except that mask fitting. I was unprepared for it, had been told nothing in advance, and it was just "done" to me rather then explained in steps as it took place. If I had had this website to reference ahead of time, I wouldn't have had that bad experience.

David,
I empathasize with your point but my health care providers did prepare me very thoroughly on exactly what to expect. The tech who made the mask was very friendly and informative. There were no surprises. Maybe that's one of the advantages of going to a CCC for treatment.

Amy I think you have MRI machines confused with the PET or PET/CT. The PET is just a giant donut like a CT machine. The MRI is the long tight tube in a large cube. They do have open type MRI machines but their image quality is not as good as the full magnet nitrogen cooled ones, such as the Siemens or GE machines.

Minniea, I had to have 2 masks made because the first one didn't turn out right.

And I did get a pinpoint tattoo - but the laser reference points were post-it dots that were scotch taped on ;-)

Stoj,
I LOVED IMRT - other than it saving my life (details) it also gave me a very reasonable quality of life back which I enjoy very much today. I have almost normal saliva, taste, etc. Other than some minor muscle damage and an occasional neck spasm that's about it.

I didn't like the side effects during treatment either but it sure beats death which would have been a sure thing thing without it. There are many here who had a much tougher time than I did. A few had an easier time as well. I didn't have a PEG tube or Amofostine. But make no mistake about it - radiation therapy is a very difficult treatment - much tougher than surgery.

Getting fitted was no big deal. I also hate my mask, but love it at the same time. It was so instrumental in saving my life. Being strapped to the table for extended periods gets very tiresome. you must have a sense of humor about the whole thing to get through the 35 treatments. Some smash their masks. I still have mine and intend to keep it until 5 years is up.

I kept the mask for a while and was going to keep it until the 5 years was up, but then I got married and when I kept getting asked what we can get rid of, I didn't think the local charity would take the mask as a donation so I finally decided to toss it. It was a good healing moment.

Jim

Thank you all for your posts.
My husband had the mask made today without any problems. It helps that we know the staff well since we both work in radiology.
He sees the GI doctor tomorrow for a pre op visit prior to getting his PEG, which will be in 5 days.
PLUS...2 more dental appts next week, too.
Therapy to start on 2/20/07..hopefully.

Gary............two mask fittings?? That would have put me over the edge for sure! Every patient that my doctors office sends my way for support, the first thing I talk to them about is the "making of the mask", as I call it. It really had that huge of an effect on me, which is silly considering the horrific surgery I endured. Go figure.

No offense Minniea,
but you're the last person I would refer a patient too for information on mask fittings. The RO's must have a twisted sense of humor...

It's a bit unsettling at first knowing that your head is clamped to the table by way of the mask until you get used to it. At first, I felt uncomfortable after being clamped down then everyone would leave the room but me. I asked one of the techs, "what if I need to get up real quick like and no one is in here"? They assured me that no less than 2 were watching me on the cameras and for me to raise a hand if I needed to get up and they would be right in.

I also threw away my mask several times after bringing it home but then would go get it out of trash before pickup day as if it were an old friend. Just haven't been able to part with it yet.

Bill D.

Considering what they charged my insurance company to make it, I'm going to put it on E Bay and maybe mention Hannibal Lecter wore it.

I think the mask might be tougher to endure than the surgeries is that during the mask fittings we are awake, whereas we can just relax and sleep through the surgeries <g>.