What if

ehowie · New User Joined: 11 Apr 2008 Posts: 7

What I refused to have a radiation mask made? I will be having 5 rounds of radiation to my shoulder and neck area. I have done research on radiation masks and I can say there is no way in hades that I will be able to wear one for 25 minutes

I have read they are so tight that they leave marks, you cannot open your eyes and it makes it really hard to swallow.

I know I cannot do this. Are there any alternative? I would hate to skip radiation but I may if I have to wear that animal mask. I would think a place as big and well known as MD Anderson would have something for people who don't want to wear the mask

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 789 Location: UK

Hi - there is no alternative. Talk to the team. It is a common fear and there are ways they can help you with this.

I know someone who had just the same fear, but once she was into he routine, she found it bearable.

brainman · Posted: Sat Aug 09, 2008 8:03 am Post subject: Re: What if

ehowie, you have been frightened be misinformation. I had 12+ rounds of radiation (3 months of weekly treatments). Yes, the mask was tight and did leave slight indentations in the skin but nothing worse than when you wake up after having slept with your face on a wrinkled sheet.

The mask is not solid but more like a net with hundreds of little holes so you should not have any problem breathing. I cannot imagine it having any impact of swallowing.

The really important thing is to get the mask made correctly. I had to have them remake my mask twice.... once because I could not open my eyes and once because the mask was too tight on my nose making it difficult for me to breath. But when I pointed of these problems to the techs making the mask, they just made news ones until one finally was right.

Your head will be bolted down tightly to the table so that I cannot move it. If that sounds like it might cause you anxiety or panic, a suggest that you talk with your doctor about your concern. After the first treatment when I was very anxious, I asked my doctor for a prescription for a short-lasting anxiety medication just to help take off the edge, so to speak. I cannot recall what he gave me. I do know that they were two pills... one to be taken an x hours before the treatment and one to be taken right before the treatment. I had no problems the second time. The third, I took only one of the pills (my choice... not what the doctor ordered) but again had no problem with anxiety before or during the procedure. From then on, I just walked in, asked "OK, where's my mask? Let's get it on so I can get home before traffic gets too bad." or some such silly comments to the techs.

As Vee said you will not be able to have the radiation without the mask. However, I hope that I have been able to clear up some misconceptions that were troubling you. Please, do not let your anxiety about the mask keep you form getting the recommended treatment... even if you have to take anti-anxiety pills every time.

You are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ehowie · New User Joined: 11 Apr 2008 Posts: 7

[quote="brainman"]ehowie, you have been frightened be misinformation. I had 12+ rounds of radiation (3 months of weekly treatments). Yes, the mask was tight and did leave slight indentations in the skin but nothing worse than when you wake up after having slept with your face on a wrinkled sheet.

The mask is not solid but more like a net with hundreds of little holes so you should not have any problem breathing. I cannot imagine it having any impact of swallowing.

The really important thing is to get the mask made correctly. I had to have them remake my mask twice.... once because I could not open my eyes and once because the mask was too tight on my nose making it difficult for me to breath. But when I pointed of these problems to the techs making the mask, they just made news ones until one finally was right.

Your head will be bolted down tightly to the table so that I cannot move it. If that sounds like it might cause you anxiety or panic, a suggest that you talk with your doctor about your concern. After the first treatment when I was very anxious, I asked my doctor for a prescription for a short-lasting anxiety medication just to help take off the edge, so to speak. I cannot recall what he gave me. I do know that they were two pills... one to be taken an x hours before the treatment and one to be taken right before the treatment. I had no problems the second time. The third, I took only one of the pills (my choice... not what the doctor ordered) but again had no problem with anxiety before or during the procedure. From then on, I just walked in, asked "OK, where's my mask? Let's get it on so I can get home before traffic gets too bad." or some such silly comments to the techs.

As Vee said you will not be able to have the radiation without the mask. However, I hope that I have been able to clear up some misconceptions that were troubling you. Please, do not let your anxiety about the mask keep you form getting the recommended treatment... even if you have to take anti-anxiety pills every time.

You are in my thoughts and prayers.[/quote]

Thank you for your kind words. I guess I will just have to pass on radiation. I am not getting bolted to a table for 25 minutes unable to move. I have had MRI done once and I nearly went bats(it . At least with that, I was able to move a bit. They said my husband couldn't be in the monitoring room to talk to me in case I got antsy.

They have told me they have all nodes out. This is being done on the small chance they are small cells.

Thank you for the info

brainman · Posted: Sun Aug 10, 2008 2:50 am Post subject: Re: What if

It is a decision that you a certainly entitled to make for yourself. However, I would strongly encourage you not to make it without further consultations with your own medical team. Like I said before, they can give you something to reduce if not totally remove your anxiety. But I respect your right to make this decision. You will still remain in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ehowie · New User Joined: 11 Apr 2008 Posts: 7

I've yet to commit either way. I need to try and push them on having my husband nearby. I know if I can hear him, I know that everything will be all right.

I know he cant be in the room with me, but I don't see why he cant be in the monitoring room

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