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The mask

drummerboyjohn
Posts: 2
Joined: Jul 2008

July 2, 2008

I am 70 years old. I am very hard of hearing and I have papillary thyroid cancer, which a thyroidectomy in November and a double dose of radioactive iodine in December did not totally kill. It was decided that 6 or 7 weeks of radiation should kill the remaining cancerous cells. Let me share with you what happened when I went to get my mask. Hopefully it will help some of you.

I walked into the room with a very nice young lady who immediately told me that I had to take off my shirt, glasses and 2 hearing aids. I told her that I would not be able to hear her when I removed them and she said “No problem, I will take care of everything”. Problem #1 – because I could not hear, she told me and showed me nothing that was going to happen. She had me lay on the table on my back and placed a plastic block behind my neck that tilted my head back. Problem #2 – apparently during my thyroidectomy my wind pipe was damaged so when I tilt my head back my windpipe closes, cutting off my air supply. The next thing I know she had tied my feet together and strapped my arms down tight against my body. I did not have a clue as to what was going to happen next. She came around behind me and said into my ear “Close your eyes. This will take about 10 minutes”. I closed my eyes and she placed the warm mesh over my face, neck and shoulders and clamped it to the table. I was totally immobile. I could move nothing but my fingertips and my air supply was even more restricted by this covering which was molded to my face, neck and shoulders. I am not claustrophobic; at least I didn’t used to be, but it didn’t take long before panic started to set in. I could not breathe. I could not speak, I could not open my eyes, and I could not move. I started to feel that I was going to pass out or worse. I was able to move my fingers of my right hand so I started banging on the metal table. Finally, after what seemed to be forever, the girl came over and asked if I was alright. I managed to open my lips enough to say “I can’t breathe, I can’t breathe!”, whereupon, she unclamped the mask and I tilted my head forward gasping for air. It took me about 15 minutes before I could speak. I asked her why she didn’t ask it I had any special throat problems and she said “I didn’t think about it”. Throat cancer patient with a throat problem – how about that. I was able to get back on the table and survive the making of a 2nd mask without my head titled that far back, but the fear I experience is still giving me nightmares and daymares. I have a real challenge as I face 6 or 7 weeks of that mask holding me down, ½ hour a day/5 days a week.

I have now seen the mask, taken a picture of it and have started treatment. On the advice of a friend, I asked the doctor for a mild sedative to take before each treatment and it has helped.

I know we are supposed to ask questions, but how can you ask when you haven’t got a clue as to what they are going to do to you. I hope my little experience will help stop it from happening to some of you.

ToniSue
Posts: 3
Joined: Mar 2008

I have never heard of a mask what is it for and what does it do ????? I know how scary it must have been for you I can hear and they have tied me down with out telling me what is going on also

tom55
Posts: 10
Joined: Oct 2008

Just joined the site today and as soon as I saw The "mask" I knew what the post would be about. I assume your R treatments are over now. I had the mast too. It was the scariest most uncomfortable feeling I ever had. It's one thing for you body to be help immobile, but it really was disturbing to not be able to move my head at all. My surgery required me to be trache'd. As you, when I laid flat or tilted my head back, I could barely breathe.
It got a little better after the first two sessions as they check and recheck the field.
What did you do with your mask after the treatments were finished? What are your complications now from the radiation? I've been all over the internet viewing discussion boards. You are the first on I've found re: the Mask Good Luck - Tom

TiffanyMichelle
Posts: 3
Joined: Oct 2008

I also had a problem with the mask. I was fully informed about what was going to happen to me, but the not being able to move was very freightening. I had a fear of something happening and not being about to get up and protect myself. I had to put myself in a different place to get through it. I wish there was a better way.

Tiffany

flygirlc
Posts: 31
Joined: Mar 2009

Is this about the mask for external beam radiation therapy? Did someone else have to go through this? I am on a support group on myspace and out of 700 + members I only met one person who had to do EBRT. I did mine last summer, 34 treatments.
I'm so sorry your team didn't explain this procedure better to you. My team was great, but I can't imagine just being thrown into that with no idea what to expect.

ayc
Posts: 2
Joined: Jan 2009

hi-how can i access the myspace support group? i am a 26 year survivor. has anyone checked out the thyca website? very informative, and there are peer support people available-i correspond with 6 people regularly to offer support and discuss problems.

flygirlc
Posts: 31
Joined: Mar 2009

You have to set up a myspace page and then click on the groups tab and search for thyroid cancer. Or you can go to my page www.myspace.com/sevencomeelevengirl and under my pic near the top left of the page it will say groups. Click on that and it will take you to a list of my groups, which include the thyroid cancer support group. Good luck!

jcvolt
Posts: 69
Joined: Mar 2009

What does the mask do? What is it for?

flygirlc
Posts: 31
Joined: Mar 2009

I believe the mask is the one used for external beam radiation therapy. This is a treatment where a very focused beam of radiation is directed at a specific place where they want to kill off any remaining tissue that the surgeon may have missed. I was surprised to see this thread on here because i was told this is a very uncommon treatment for thyroid cancer. I mentioned above that in my 700+ member support group, there's only one person I could find who went thru this besides me. I guess I should mention that it is a support group specifically for thyroid cancer. Anyway, the mask holds your head in the exact position they want so they can target the right area with greater precision. It's kind of a plastic mesh, they custom mold it to your face and it's very very tight and restricting. So you lie down on this table/board and they place the mask over your face to hold you completely immobile. You can't open your mouth at all so no talking and I could barely open my eyes, just enough to squint. Not my favorite way to spend ten minutes every day but it's behind me, thank goodness.

zepfreak
Posts: 24
Joined: Mar 2011

My experiance was dreadful. I am not claustrophobic, but the location of my cancer makes laying on my back VERY unconfortable. As they pressed the warm, wet plastic over my face and snapped it to the table, i felt as though i could not swallow. This in turn made me mentally feel I could not breathe. I prayed to God and tried to think of positive and happy thoughts as the process continued. Bound to the table and unable to move i did have a high degree of anxiety but did make it through the procedure. The dr. came in and said the mask was made at an incorrect angle and had to be redone. I panicked and unconciously backed into the corner. The dr. prescribed something to mellow me out and re-scheduled me for two days later. I had a panic attack so bad that night that i thought i was going to have to go to the hospital. A friend finally "talked me down". I made it through the 2nd time with the help of the adavan, and the thought that this has to be the worse experiance i'm going to have. I'll see, i start wearing the mask for 20 minutes a day, 5 days a week, for 7-8 weeks.

alapah's picture
alapah
Posts: 259
Joined: Oct 2009

It is an unsettling experience, to say the least. I had 30 EBR treatments to the neck for papillary thyroid cancer in the fall of 2009. When the mask was made I remember thinking it wasn't as bad as I had imagined. But then came the first EBR appointment. It seemed so much tighter and when I was clamped to the table that time I did get anxious. I didn't open my eyes during treatments. Some places will play music for you. I just tried to get in a zone. In the beginning I found it especially difficult to deal with swallowing in the middle of it and I always kinda felt like I might choke. I learned that I was OK to swallow between the beams - and when the machine was beaming it made a particular sound. I got to know the pattern as it rotated around my head so I knew when the longer breaks between beams were going to be and could swallow then.

The technicians were so good. Though in the other room, they watch the patients and they can see if someone is in distress. They can talk to the patient via an intercom and hear the patient. They were really nice and I think the mood they set also helped me in terms of calm etc. Twice I had a longer time on the table because the machine had some issue and had to reboot - it knew exactly where it had stopped so that wasn't a problem - but it did mean I was that much longer on the table. Though that was trying, I did make it through - and I wanted you to know that you're not alone. Some people do find they need meds for the calm and that's ok. Very best to you.
eileen

zepfreak
Posts: 24
Joined: Mar 2011

I had my 1st treatment today, and it was very tolerable. I was extremely nervous leading up to the event, but that was mainly due to lack of knowledge and memories of the mask-making session. I take a van with 3 or 4 fellow patients to the main treatment center. I was lucky and befriended a fellow patient that reassured me that making the mask was by far worse than the treatments. Looks like its down hill from here. Can't wait for April 22, my last treatment.

alapah's picture
alapah
Posts: 259
Joined: Oct 2009

I found talking with other patients, particularly those further along than me with similar treatments, was a huge help. During my six weeks of treatment I was able to stay at an American Cancer Society lodge next to the Mayo Clinic as I had come far from home. So many great things about that place - but one benefit I had not thought of before being there was the friendship, advice, support etc of patients, staff and caregivers. I got some great advice from others having neck radiation - eat whatever you want in the start because once it gets painful to swallow it'll be harder to eat. Eat as much protein as possible for healing - scrambled eggs went down well, for example. Drink whole milk, especially once it gets too painful to drink water. Towards the end of the six weeks and for a bit post treatment I ate little but whipped cream (unsweetened would be best!) and, believe it or not, baby food. Just try lots of things to see what works.

Once my throat got raw I started using Cepacol but after a while that didn't help as much so my docs gave me a prescription for a liquid codeine medication which was very helpful for dulling pain to make it easier to eat and drink. Got to stay hydrated with pain killers though.

For the skin, I started early on applying aloe often and then ended up doing diluted vinegar compresses. Eventually I got a prescription for a cream called Silvedene which worked amazingly well.

After a while things catch up and radiation makes you tired. First three weeks for me were pretty uneventful. I so hope they will be for you as well. It's not an easy journey but it sounds like you're building a good support base.
eileen

butterfly123
Posts: 52
Joined: Feb 2010

I am glad you shared your experience. I had the mask too! I thought that I was the only one that has a very stessful experience. I remember vividly that hot mask being smothered over my face with hands pressing down all over. I felt like I could not breath but managed to stay calm. Then after the mask was made I had to have the MRI. The mask bolted down to the board, then the MRI mask, then the MRI machine. AAUuuHHHH!!! Luckily I only had to have 5 beam radiation treatments that lasted about 20 minutes although that mask brought out my claustrophobic side that I never knew existed. I have the mask and trying to figure out how and where to burn it. Best of luck to you and I hope the treatment was successful.

LBlackman
Posts: 113
Joined: Mar 2011

I cannont even imagine having to go through that. I have herniated disk in my neck and low back and am clausterphobic. Having to lay flat and still for the body scans is torture for me. You all are very strong people and in my thoughts and prayers that you will be able to get over this horrible experience. It's a shame that some people in the medical profession aren't more compassionate. Some are awesome, but every now and then you get that one person that is in the medical field for the wrong reasons. Best of luck to you all having to go through that, you are all amazing people!

sunnyaz
Posts: 582
Joined: Oct 2010

God, I pray that I never have to go through what these strong people have endured.

I am so claustrophobic that even the RAI scan scared the bajeeber's out of me. The tech's had to put a rolled up blanket on my chest to stop the scanner from coming too close to my face. MRI's are out of the question. I think I would have to choose multiple surgeries or death over this treatment. Just reading these posts gave me nightmares.

God bless you all,
Julie-SunnyAZ

rld333
Posts: 1
Joined: May 2013

I had a similar panic experience. I asked for a trial run on the bed with the mask locked in place, without going under radiation, and a demonstration on how I could unlock one side of the mask in an emergency. Simple conditioning. That was all I needed to overcome my fear. Our "emergency" plan was that I would ask the attendant to stop the RT, and then I would unlock the mask. Just the knowledge that I could "escape" along with the experience of remaining with the mask in place for the required time was sufficient. Interesting that none of the information on RT that I've read makes any mention of this technique. I remained in the clinic until there was an opening in the schedule in order to do my trial run. The RT staff cooperated and were very pleased with the result. Simple "conditioning" is common sense. Guess most of the radiation oncology professsion doesn't have time for such nonsense.

 

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