Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Radiotherapy mask on head and neck

Drivermason
Posted by

Hi everyone 

My husband’s CT Planning Scan had to be abandoned on Friday.

He got as far as lying on the bed and had the cannula in for the dye but he couldn’t cope with the mask.

They made some adjustments including cutting out eye holes but when they’d finished the mask wasn’t tight enough on his chest and had to be made again.

Hubby is really tough and strong but this is causing him so much angst. He’s not claustrophobic but says the mask is pushing on his throat as though someone is trying to strangle him.

He does have a 7cm tumour on the side of his neck which I assume isn’t helping. 

However I’m wondering if this choking feeling is normal or if he should persevere till he’s comfortable.

I was wondering about him taking Diazepam to help him cope with this but then he may need it for all 30 radiotherapy sessions. I have some in the house that the doc lets me keep for emergency MRIs as I have cancer too.

We need a plan before tomorrow. 

Any advice gratefully received.....and then I might ask about the PEG tube fitting as he has that to look forward to on Wednesday.

Much love and thank you for reading.

Sharon and Ken xxxx

Much love

Sharon and Ken xx

You never know how strong you are until being strong is the only choice you have.

 

 
 
Totolemar
Posted by

Hi sharon 

Just completed my radiotherapy in September and I had mask for 35 sessions  ,wasn't pleasant but I was told by my radiographers to tilt my chin back slightly and push up into the mask if that makes sense which sorta took the pressure off my Adam's apple,I could swallow but felt the mask tho,but I could bear it for the duration which was 5 minutes top when I was strapped in for radiotherapy 

Hope this helps some what ,there's plenty of help and goodwill here from everyone and found it really helpful to have a place to go to for any worries or concerns I had

Good luck to you both

Martin
see you on the flipside
Drivermason
Posted by

Thank you for the speedy reply Martin.

It is really appreciated and very helpful.

I hope you are recovering well from the radiotherapy side effects.

Good luck with whatever comes next.

Thanks

Sharon x

Much love

Sharon and Ken xx

You never know how strong you are until being strong is the only choice you have.

 

 
 
LindaWT
Posted by

Hi Sharon and Ken

I had exactly the same feeling when I had my mask fitted.  I couldn't breathe as the mask was pressing on my throat as well as my nose.  It took about 13 goes of putting the mask on and making minor adjustments to get the mask right and even then I had my doubts as to whether I'd be able to wear it for the duration of the rt.

The radiographers were  very patient and wanted to make sure the mask was as comfortable as possible before treatment began.  One of the adjustments they made was to cut out a small section around my Adam's Apple which made a big difference.  Obviously the mask must be very tight fitting to avoid any movement.

After worrying about how I was going to cope for the couple of weeks while I was waiting for  rt to start I found that when I actually started the treatment the experience wasn't nearly as bad as I'd imagined.  Personally I found that not wriggling around once the mask was in place helped enormously - didn't make me feel claustrophobic.   Also, they played music as a distraction and it was over and done with quite quickly.

My advice would be to speak to your team about any worries as they may be able to offer something to calm any nerves or make some minor alterations to the mask.

I wish you all the very best.

Linda

Drivermason
Posted by

Thank you Linda for your really comprehensive response.

I think we will ask them to cut the Adams Apple area out too as that is what Ken is struggling with the most.

Our problem now will be timing as they’ve squeezed us in tomorrow at 12:15 but we need to be done by 1:15 for his pre chemo assessment. 

Of everything he’s been through and has to go through, it’s the mask and the PEG tube that worry him the most.

He starts the radiotherapy 28 Nov.

This forum is invaluable to us right now.

Thank you for taking the time to reply.

Sharon xxx

Much love

Sharon and Ken xx

You never know how strong you are until being strong is the only choice you have.

 

 
 
LindaWT
Posted by

No worries Sharon.

Most people who have a PEG seem to get on fine with it so hopefully Ken will too if he goes ahead with it.

Hope tomorrow goes well.

Linda

chris2012
Posted by

Hi Drivermason, isn't it funny, i was more wary of having the canula put in, still, am even after my treatment. Some great replies to your post so far, Ken must be comfortable with his mask as its an important part of the treatment so you should persevere if possible. I had to have mine adjusted a couple of times as it began to pinch a bit, hopefully, they can adjust it so it takes away the choking feeling. I agree the PEG was a godsend for me and never had any issues with although some people find a bit uncomfortable to begin with, a bit like any surgery. I know some people that take a calming tablet during the treatment period so maybe mention it to the oncologist. Its always difficult first time when having this treatment but as the days go by it gets easier and less stressful. The oncologists are on your side and will do their best to get the treatment done as quick as possible, as Linda said they played music during the radiotherapy with a screen above you playing calming videos, but not sure if all oncology suites do the same. I hope all goes well for tomorrow, best wishes to you both, take care .

                                                                                              Chris x   

Its sometimes not easy but its worth it !                Click here to find out more

Drivermason
Posted by

Hi Chris

Thank you for your reply. 

I really appreciate all the help and advice on this forum. 

You’re very right....different things worry different people. 

I’ve had 2 fairly major operations in the last 4 weeks, including a total mastectomy and reconstruction but now I’m worried about the radiotherapy!  I’m great with needles but can’t stand seeing blood!

The team actually inserted 3 cannulas last Friday as they couldn’t get the first 2 to work! And then the whole thing was abandoned so the cannulas were all in vain! Pardon the pun!!

We’ll keep asking them to adjust till Ken is as comfortable as he can be and hopefully all will go well.

We’d never been to James Cook hospital before last month and now we’re there every day.

At least we’re both on the sick together and can support each other.

I hope you have recovered well and your treatment was successful.

Thank you again

Sharon x

Much love

Sharon and Ken xx

You never know how strong you are until being strong is the only choice you have.

 

 
 
Drivermason
Posted by

Thank you Linda.

I hope your treatment worked well for you and you’re coming out the other side. 

Im wishing you well for the future.

Much Love

Sharon xx

Much love

Sharon and Ken xx

You never know how strong you are until being strong is the only choice you have.

 

 
 
chris2012
Posted by

No worries Sharon, sorry to hear that you have been through major surgery just recently, you could post in the breast cancer group as i know there will be people on there to help you with your worries. I had similar with the cannulas where it took them three attempts, i was not a happy chappy, i will excuse the pun , im ok with blood tho. Yes, the hospital becomes our second home for a while, hopefully not to long, im sure your support for one another will be very welcome. Im all good now thanks.

                                                                                Chris x   

Its sometimes not easy but its worth it !                Click here to find out more

Trickycycling
Posted by

Hi Sharon. Just finished 6 weeks of adjuvant RT for H+N cancer. The mask was one of the hardest things to deal with. I found it easiest to:

1. Shut my eyes just before it went on until the treatment was over - it’s almost impossible to open them in the mask anyway

2. Understand the process and duration. Getting set up on the bed, CT scan, review, treatment doses. All in all maybe 6-8 minutes. When you know what is coming and the timing it is easier to relax.

3. Get the staff to talk to you through the intercom. Talking you through each stage so that you know you are on track and what is happening next.

4. So whatever works to relax. I concentrated on deep breathing and zoned out, thinking about other things, almost like taking a nap!

5. If possible stay on the same RT machine without the same crew throughout - it feels more familiar.

my only wobble was in a day when I was taken into another machine. The process was different. The team cane back out to adjust the bed manually after the CT scan. I had no idea what was happening or how long it would take. And of course you can’t speak! I ended up baling and going back in my original machine. 

I hope this helps!

One of the lucky ones.
Drivermason
Posted by

Thank you for your really detailed reply.

Ken’s scenario is very similar. Left tonsil cancer and secondary 7cm tumour in left side of neck. 

No one has told us the stage yet and we had to push to find out (only today) that it is HPV related. 

No surgery planned to remove the lump but starting 30 days of radiotherapy and 6 rounds of chemo next week.

He managed the CT Planning scan today and hopes he will manage the next 30 RT sessions. He will certainly take your advice on board in order to get through it. 

I hope you are doing well and on the road to recovery.

Thank you

Sharon x

Much love

Sharon and Ken xx

You never know how strong you are until being strong is the only choice you have.

 

 
 
Trickycycling
Posted by

Thanks Sharon. I hope all goes well for Ken. I found the RT staff to be lovely - they are all so compassionate. And I think they are used to people sometimes struggling with the mask so no shame in needing tolerance and patience.

Good luck!

One of the lucky ones.