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