I poured through the forums (fora?) looking for info about the simulation appointment and couldn't find anything. Am sure I overlooked something; there seems to be information about absolutely everything else.

My appt is January 28, followed by a PET scan on the 29th. I've seen pictures of the mesh mask and read about the procedure used in shaping the mask. Yikes! The Marquis de Sade must have had a hand in this one.

So: how tight is the mask over the face? Tight enough to hurt and bring tears to my eyes or merely very tight? Will the mesh cut into my face at all? Will I arise with a waffle indentation pattern that will go away in a short period of time? Has anyone freaked? Any questions that I missed?

My doc mentioned Erbitux as a treatment possibility later. He mentioned that one of the side effects is acne. I kinda' laughed and said that was ironic because back in the Fifties I had radiation treatments to 'cure' acne. His ears perked up as he went through my paperwork and told me I hadn't mentioned it. I simply forgot about it until the mid-Eighties when the hospital I'd gone to located me, saying there might be after effects of the radiation treatments. I went in for a thyroid scan (immediate and free) and all was well. The doc said that it might have been a contributing factor to this cancer. Whether it is or not, am sure that it was smoking that did most of the work.

Thanks to everyone for responding to my earlier Newbie message. I feel at home here and will depend upon you for information. I hope to be of help later as more newcomers sign on. Right now I'm just frightened but don't feel alone.

Oh, Chelle, Sweetheart! What a low blow you've been handed at such an early age. At this time in your life aren't you supposed to be vacationing in Ibiza (I think that's where you lot go), and doing things you'll never admit when you get back home? I admire you so very much and appreciate your posts. When I had breast cancer I was most affected by younger and younger women receiving the diagnosis. It should be something never suffered by those in their twenties and early thirties; young Moms in particular should be exempt.

Sigh.

This message has been edited. Last edited by: Dr Vinod K Joshi,

HI Mimi,
Do not worry about the "Mask" or shell. It is a tight fit intended to avoid movement when being treated and on which marks are made on the simulator for the guidance of the radiotherapy teatment. My wife found the shell only "uncomfortable" for the last three or four treatments due to swelling on the underside of her neck, but not enough to have a new shell made, which they offered to do.

Don't know about the other treatment but understand your Consultant's concern to learn of the earlier treatment just as well that information came out it will be taken into account I am sure.

You sound a bit chirpier today that is good: glad we are helping a bit. Alan

Mimi you will have a mould of your face taken before they make your mask,so it should be made to measure,then you will have a "final fitting",and it is up to you to tell them if it feels too tight or is uncomfortable.
I went to every one of Robins 35 treatments,and i never saw the waffle pattern on his face ,but unfortunately he had to have a second mask made half way through because he lost so much weight.

Make sure you have plenty of emulsifying cream,and plaster it on your face every day,and drink plenty of water.If claustrophobia is a problem,speak to the radiologist when you have your simulator appointment,and i understand you can even have your own music with you during treatment.

The actual treatment is very doable the side effects are a little more difficult,but i bet every question you come up with will be answered by someone who has "been there and done that ".

good luck
liz

Stephen said the mask fitting was a breeze. He did have a bit of "waffle" impressions after his treatments (15-20 minutes daily), but they disappeared within a half hour. Claustrophobia was a bit of a problem, so his doctor prescribed Lorazepam, which he took about an hour beforehand. That was a great help for dealing with the daily radiation therapy treatments (and he didn't have any trouble stopping the Rx after treatment ended).

All the best with your appt. and treatment.

Susan

Simulation? never hear of that one. Bill is extremely claustrophobic and totally freaked at the MRI Scan but coped with the mask without a problem.

Good luck withyour appointment.

Hi! Mimi McC,
Simulation was something I had before my RT treatment started It was where they lay you out on a scanner( low powered) and set up the points where the RT beam is to be shot at you,this is non eveasive and takes about 20 minutes, they also form your mask at this time as well.
I hope this clears up your queries?
" This is what happened to me in Australia and may differ in USA "

Love TREV

Hi! Susan & Stephen,
Just a word of advice make sure that you are applying plenty of Sorbelene Cream before and after treatment. I started 2 weeks before my RT started and have had NO trouble with burns or scaring. Continue applying the cream during the day and night ( it works )
Best of luck and "Stay Strong"
Love TREV

The main thing I recall is that when held down by the mask during the radiotherapy sessions do not try to rise out of the mask to get away. As you rise so the mask actually gets even closer to your skin and so you feel held more firmly. The main word is relax under it. This is very hard to do, but does come after a few sessions. The mask is very close to your skin, but be reasured there are holes for breathing.

Please note this was 5 years ago and some clinics, even then used other materials as you mention, such as mesh. My mask was clear. This is a doable experience, but I disliked it.

I lost so much weight they threatened to make a new mask, but I was all prepared to refuse, but do remember that what probably kills those rogue cancer cells is the radiotherapy.

How long you are on the table will depend for daily rads on your cancer being known or unknown position. Since I was unkown primary I had 4 separate bursts of rads and that involves 4 arangements of your body - left and right side of head and neck/naso pharyngeal area then top and back neck/lower head. Each radiotherpy burst itself is over in 30 seconds, but since the body need rearranging for the next bout a session can take 20 mins to up to half an hour. The technicians are very careful in being super precise to the half millimetre. You just need to learn to lie very still and cooperate.

Two female tips don't do as I did - I wore 'almost new' suede trousers for the 'long' simulation - wear something loose and comfortable and wear the bra you can wear repeatedly. It's easy to think I'll wear lacy/ pretty, but a basic bra may be best. They prefer the same bra as different bras can affect the fitting around the mask collarbone - especially as weight is lost any uplift might collapse and so alter mask fit.

This message has been edited. Last edited by: PaulineT,

Oops and if you suffer with back ache a support pillow under the knees during treatment may be useful. Just ask and they will find one - best done at simulation stage.

Mimi,

the problem i had with the mask was a misunderstanding on the instructions. since my shoulders would not lie flat i had the board put at the end of the bed with ropes which were wrapped around my wrists. pushing on the board brings your shoulders down. for me, it was pure torture. i did not think i would be able to endure it. told this to my wife and after going through the boo hoo routine.... she had her mother who is a psychiatrist call me to ask what was wrong... told me it was a simple problem and that i should just ask the doc for a sedative which i would take before my treatments. when i mentioned this to the techs before the next treatment they asked me what was wrong.... told them have my legs stretched out to put pressure on the footboard was almost impossible.... this is when they told me that i didn't have to push hard... and the problem was solved.

i mentioned earlier in a post on this site that i used to stop at mcdonalds sometimes twice a day and eat their double cheeseburger & fries off the value menu... $2.15. didn't make any difference if i had just had my regular meal. this helped me retain my weight. in the a.m. and sometimes at night i would eat oatmeal (1 1/2 cups water, 1 1/2 cups oatmeal with 1 cup of organic milk heated in the microwave) which was soothing to my throat. as i got further into the treatments i started eating the Banquet Salisbury Steak TV dinners which i bought at wal-mart for 88 cents each. they went down quite easily.

i weighed myself each a.m. and once i started the treatment i maintained my weight by eating more if i lost a pound.... was drinking ensure too + i would stop by the dairy queen for chocolate milk shakes.

i was lucky since my throat did not get to tore up during my treatments. i did have IMRT and they were long treatments. about 15 minutes where most other people going before me were in there for about 5 minutes.

so yes, it is uncomfortable, but it is doable and i am sure you will learn to cope with it just like everyone else does.

just remember if it is a real issue, talk with the doc about sedatives....

good luck and it will be over before you know it....

I think everyone else summed it up nicely.
The mask fitting and Sim are different things though.
The mask IS very tight - but not painful. I couldn't blink very easily. I had the lattice marks on my face for about 20-30 min or so. My biggest worry bwas being sick whilst wearing the mask but it never happened and they can see everything thats going on.
Trevs discription of the Sim was good. It reminded me of the matrix with the green lasers everywhere. Your strapped down and they take measurements.
Try not to get worked up. & put yourself in a happy place

Hello Mimi

If anxious, you can try a relaxation technique others have found helpful:
==============================================
1. Lay down on your back with the palms of your hands on your abdomen.
2. Close your eyes and breathe in slowly and deeply through your nose.
2. As you breathe out slowly, feel yourself beginning to relax; feel the tension leaving your body.
3. Now breathe in and out slowly and regularly, at whatever rate is comfortable for you. You should feel your abdomen rise as you breathe in and fall as you breathe out. (abdominal breathing). Do this for a couple of minutes.
4. Become aware of your breathing. As you breathe out, say the word, """ONE""", silently to yourself. Breathe easily and naturally.
5. Continue for 10 to 20 minutes. You may open your eyes to check the time, but do not use an alarm.
6. End with a slow deep breath. As you breathe out say to yourself """I feel relaxed."""
==============================================
You could use this relaxation exercise while the mould is being made.

Best wishes
Vinod

Also see this previous discussion: mould (for face mask) appointment

Thanks to everyone. Dr. Joshi, it's a pleasure to meet you. I've been through most of the threads and read all your responses and often take notes.

Now that I understand the mask portion of the simulation, it's far less scary. The method that Pauline describes from five years ago is not in use where I'll be going. What I'll have is probably what most of you have had: The mask starts out as a flat piece of mesh that is heated in warm to hot water and softened until it is pliable. They lay it on your face and press it in to all the nooks and crannies to form the mask. It takes about ten minutes to cool and harden during which time you're laying as still as you can. It fastens to the table to prevent movement. There is a bit of pressure on the face but far from painful. I think the earlier method of making a mold out of dental plaster and smearing over the face is the part that freaked me most. I have a fear of gagging and the thought of gagging, not being able to see with the plaster mask being applied and not being able to move....well, it's nightmare time. Whew. Am relieved that at least I don't have to worry about the not-seeing portion of it.

I haven't had any claustrophobia problems with PET and CT scans and went through breast cancer simulation easily; however, although it was a very long uncomfortable process, it didn't feel as invasive as a face mask seems. I hope that makes sense!

Thanks to Pauline for the 'female' tips, to Trev, Chelle, Pete, Dr. Joshi and everyone else for the practical tips and good wishes.