topic Re: Brain radiation - madks in Treatments and side effects

Brain radiation - masks

Megan — Sun, 20 Jan 2019 10:10:27 GMT

Hi, I’ve been told to have radiation for the cancer in my brain (its in other areas also).

So I have to have one of the masks - could others please tell me their experiences?

I‘m terrified of wearing the mask. Thanks.

Re: Brain radiation - madks

Budgie — Sun, 20 Jan 2019 07:45:48 GMT

Hi Megan,

I've had a couple of masks made for radiation to my neck & head. It's not that bad, as the masks are made of a mesh. They dip it in hot water so that it can be shaped to suit your head. So it is quite warm when they put it on you. They have to work quickly so they can mold it while it's still warm. You have to lie still for about 15-20 minutes while the mask hardens. They do make it tight, but it has to be tight so you can't move during the radiation. Having said that, it's not so tight that it's terribly restricting. There is usually a little bit of wriggle room. Try to keep as still as you can, but most importantly, RELAX!

Good luck with everything.

Budgie

Re: Brain radiation - madks

Megan — Sun, 20 Jan 2019 10:07:44 GMT

Thank you so much for your reply.
That all still sounds terrifying to me.
I’m going to talk to the Dr again and try get as much info as possible.

Re: Brain radiation - masks

Felix34 — Sun, 20 Jan 2019 12:58:12 GMT

Hi Megan,

I had one mask made for radiation and I agree with what Budgie said with his experience. Mine was very similar. With my fitting it took my breath away when they put the warm mould on your face then you get use to it. I found that worse than the radiotherapy sessions.

During my 30 sessions of radiotherapy I put on weight due to the amount of steroids I was on so my face did puff up and the mask was extremely tight in the end which gave it a bit of a claustrophobic feel.

You do get used to it you just need to relax and breathe.

Take care

Colin

Re: Brain radiation - masks

Margaret_CCNSW — Tue, 29 Jan 2019 04:10:25 GMT

Hi @Megan,

You might find it helpful to watch a mask being made for ABC radio presenter and Cancer Council podcast host Julie McCrossin here. The video was made for a great Head and Neck cancer website Beyond Five.

Kind regards,

Margaret

Online Community admin team

Re: Brain radiation - masks

CaptainAustrali — Tue, 29 Jan 2019 08:17:20 GMT

The mask fitting: they lay you down and fit this special mesh mask to your anatomy, it needs to precisely and tightly match your face. It feels like being restrained with a heavy wet blanket sitting over your face, and you can breathe through a small hole. If you had any claustrophobic tendencies, this is the part that would suck the most. You have to lie perfectly still for half an hour (but there are nice people with you, watching you like Baby Jesus, so try not to be scared). Lying still for half an hour is a skill you're really going to need later.

Daily Treatments: you're slid into a CT-style tube, and yeah if you have claustrophobic tendencies, it's going to feel like a coffin. If that's your grave concern, ask about valium or other strategies. If you're not particularly claustrophobic you just have to soldier through, listen to music, let your mind drift. The mask restrains you but you can still wiggle so you have to try and be as still as possible, it's surgical precision at work (hopefully!). As a head and neck sufferer, I had Mucositis, which is ropey phlegm, kinda like post nasal drip, so lying down was a real trial .. but hey, it's a half hour at a time, just need to soldier through. If there are major mental stresses, seriously ask about valium or other coping strategies.

After: I kept my mask as a souvenier. It looks creepy, but it was key to my cancer survival, so it's a treasure.

Re: Brain radiation - masks

Megan — Sun, 14 Apr 2019 01:06:36 GMT

Thank you everyone for your feedback. I do appreciate it.

At this stage I have decided not to have the radiation as my mother is in hospital (has been for four months) so I have to help/deal with a lot of stuff connected with that.

I have not completely ruled it out though. 🙂

Re: Brain radiation - masks

Megan — Sun, 14 Apr 2019 01:08:10 GMT

I'm not sure if my previous reply dated today will show up to everyone's reply so thought I'd reply individually in case it doesn't.

Thank you everyone for your feedback. I do appreciate it.

At this stage I have decided not to have the radiation as my mother is in hospital (has been for four months) so I have to help/deal with a lot of stuff connected with that.

I have not completely ruled it out though.