Log in or Register to participate in these discussions

The dreaded radiation mask

The dreaded radiation mask

Posted by NotAlone on Sep 7, 2019 12:38 am

I was diagnosed with squamous cell carcinoma of the ear canal & temporal bone in February 2019. I’ve had 2 surgeries, and just started radiation yesterday. I’ve had 2 of the 33 planned treatments. 
I would love to hear from others who have had to wear a mask for their radiation treatments. Mine extends to just past my shoulders. They cut out holes for my eyes, but not my nose or mouth. My biggest issue is with how tight it is on my throat. It is tight enough to leave a honeycomb pattern on my skin for several hours afterward. Is it normal for it to be so tight?  I’m struggling to keep the claustrophobia at bay. I have a lifelong aversion to having anything close to my throat such as necklaces or shirt necklines, so my anxiety is quite high when they fasten the mask down to the table. 
I’d like to ask if they can cut out the area where my thyroid is quite prominent but I doubt they would be willing to do that. 
The radiation is limited to my ear.  They decided that my lymph nodes do not look suspicious so I am not receiving radiation to my neck. 
It’s a bit lonely having a cancer that nobody else on this forum has experienced, but I’m sure others can relate to the radiation mask!

Re: The dreaded radiation mask

Posted by Cynthia Mac on Sep 8, 2019 9:20 am

NotAlone‍ , I’m going to tag JamesT‍ Because he has experience with ENT cancer, and he might be able to help answer your question.

I’m pretty sure they’re going to want to protect your thyroid at all costs. I’m no anatomy expert, but I believe the thyroid is kind of protected by the junction of your collarbones at the base of the neck. If you’re feeling pressure from the mask on your throat, could it be that the pressure is being put on your larynx (voice box)? You might want to ask somebody who’s got more anatomy training — I think someone in high school biology might do it! 😉 

Re: The dreaded radiation mask

Posted by Lacey_adminCCS on Sep 8, 2019 10:20 am

NotAlone‍ 

My Dad wore a mask similar to what you described for his radiation for tongue cancer. I can definitely understand why you are feeling claustrophobic.

I would suggest letting your team know. It is important that you are comfortable enough to make it through your treatments. They may have some tips or tricks up their sleeves.

law‍, OreTimber‍ any experience with radiation masks you can share?

Please let us know how it goes!

Lacey

Re: The dreaded radiation mask

Posted by law on Sep 8, 2019 3:50 pm

Hi NotAlone‍ Ore Timber, Lacey, Cynthia Mac,
Thanks for the feedback NotAlone, as I went thru 36 rounds of radiation for tongue cancer . Oh Yes--- I saved my radiation mask as it will be a great Halloween costume and should scare all the trick-or-treaters!
I had to get fitted for the mask, and the techs explained the procedure of:  the wet gauze being placed and then hardening tightly on my head, face, shoulders---- and of course they first tattooed a dot on my chest to align the materials with my upper body. It is painless, yet rather odd to be snapped to a table wearing the mask.
I was able to breathe, but if you feel constricted or claustrophobic, let the techs know, and suggest they  give you a sedative, in which case you will then need someone to drive you home.
Yes...it was freaky wearing the mask and being strapped to the table each time I had the radiation. I had to trust that the techs would eventually un-snap me, rather than keep me constrained [as if in a horrid James Bond movie.]
The only way to keep your head and upper body still is to immobilize your head and neck; otherwise the rays are not precisely aimed. It's a time to close your eyes, meditate on getting rid of the cancer invaders, yet keep still while remembering to breathe slowly. 
The mask shouldn't constrict your airway, so let the techs know if it is too tight, rather than just a snug fit.
I hope this helps...Please let me know what happens before your first round of radiation.
Hang in there, bring someone with you if that will make you more comfortable, and remember radiation will end after about 10 minutes per treatment.
law

 

Re: The dreaded radiation mask

Posted by JamesT on Sep 8, 2019 4:26 pm

Hello NotAlone‍ 

Sorry to hear that you have cancer.

I had throat cancer and went through 35 radiation treatments with a head mask.

I am 2 years post radiation now.

I don't remember if there was a hole for the mouth or nose.  I think the mask has holes throughout.

If it's that tight making that much of a mark on you, that sounds a little tight.

Suggest after your next treatment to talk to them and find out if you should be re-fitted for another mask?

As far as your thyroid is concerned, it was a potential concern for my radiation, and the radiologist said that post radiation they would take a blood sample to test my thyroid and there could be the chance that it was affected, that I would need to be on a pill.  Much more important for me to get rid of the cancer.  Thankfully my thyroid wasn't affected.  

Stay in touch.  This is a good website to share experiences.

Sincerely,


James

Re: The dreaded radiation mask

Posted by Ken Anderson on Sep 8, 2019 7:19 pm

NotAlone‍,
I would be really surprised if the radiation therapists would not cut a hole where your thyroid is.  The purpose of the mask is to stop you from moving, and small holes (like those over my eyes and mouth) have no impact on that.  I would think that your head and neck would still be immobile if you had a hole cut directly over your thyroid to relieve pressure right there.

It never hurts to ask for help from your therapists; the worst they can say is "no", and tell you at the same time why not.

-Ken

Base-of-tongue SCC, with just 5 of 35 doses left.
https://dealingwithbaseoftonguecancer.home.blog/
 

Re: The dreaded radiation mask

Posted by NotAlone on Sep 8, 2019 8:39 pm

Thanks for the input, everyone!  I think I’ll ask tomorrow if they can cut a hole for my throat. It sounds like my mask is a bit tighter than it should be. 
Meanwhile, I’ll remember that the discomfort is just part of the battle, and that progress is being made with each session. 
I’ve  ordered a t shirt that says “radiation would be much more rewarding if cancer screamed while you destroy it”.  As much as I hate wearing the mask, I’m going to imagine the cancer cells screaming as they die!
I’m planning to continue to work for these first 2 weeks, then I will go on medical EI. At that point, I may request Ativan to help me through it. 

Re: The dreaded radiation mask

Posted by Cynthia Mac on Sep 9, 2019 7:56 am

Right, NotAlone‍ , I just LOVE your T-shirt idea!  And, law‍ , that’s the second time I’ve seen the word “meditate” used in a post this morning! Also a good idea!

Re: The dreaded radiation mask

Posted by Lacey_adminCCS on Sep 9, 2019 12:44 pm

NotAlone‍ 

Let us know what they say! 

Great idea...picture those cancer cells screaming!!

Re: The dreaded radiation mask

Posted by NotAlone on Sep 9, 2019 7:03 pm

Alas, no hole can be cut in the throat area of the mask, but they did add a spacer to give me a tiny bit more room, so that helped. The only other option would be to get a new mask made, which would result in an interruption in my treatments. My friend who has had radiation for brain cancer assures me that I will grow more accustomed to the sensation of wearing the mask, so I will continue to just take it one session at a time!  Each day brings me closer to the end, and each day will help me to win more years with my husband and daughters. It’s worth it!  
Ken Anderson‍ , I am following your blog Dealing with Base  of Tongue Cancer, and find it very useful to understand what I might be experiencing with radiation in the coming weeks. I really appreciate reading about your experience. 
 

Re: The dreaded radiation mask

Posted by Cynthia Mac on Sep 10, 2019 8:52 am

I’m glad that they’ve found a solution that will keep your treatments moving forward, NotAlone‍ . 

Re: The dreaded radiation mask

Posted by Lacey_adminCCS on Sep 10, 2019 10:51 am

NotAlone‍ 

So glad they had an option to try! I hope like your friend mentioned it gets more tolerable.

I'm so glad you posted I know others will find this info helpful in the future! Thank you!

Lacey

Re: The dreaded radiation mask

Posted by Ken Anderson on Sep 10, 2019 11:54 am

NotAlone‍,
I too am glad that you're open to the idea that the mask may not always be your enemy.  In my case, I've actually fallen asleep under my my mask, even though I'm under it for less than 3 minutes!  I'm happy that the therapists are stopping me from fidgeting and screwing up the VERY accurate radiation targeting that these machines are capable of.  I don't want nearby tissues to be unnecessarily hit by radiation, so I welcome the mask.

Good luck with your treatments.

-Ken

Re: The dreaded radiation mask

Posted by OreTimber on Sep 10, 2019 1:46 pm

7 weeks of radiation therapy and I completely understand where you're coming from.  My mask wasn't  as large as the one mentioned here.  What I did was think of things I'd like to do someday after the treatments.  I would think of building an engine, walk through it step by step in my mind.  The more detailed you get the better.  Think of a pleasant activity "you" like.  A favorite hike, a favorite activity or family outing step by step, keep your mind occupied and the time passes faster.  Remember, the mask helps eradicate the cancer by keeping us still throughout the procedure.  Good luck with it and my prayers are with you.  Photo is of me (the old guy) with the only one strong enough in camp to make the hike with me.  This is at the top of Deschuttes River canyon in Oregon after a 2 hour climb. One year after radiation.  Loving life to the fullest and what you are experiencing will soon pass.  
Attached files

Re: The dreaded radiation mask

Posted by Lianne_adminCCS on Sep 10, 2019 1:57 pm

Nice to hear from you OreTimber‍ and  how you are enjoying life. Great pic.

Thank you for sharing and showing what it can be like on the other side of treatment

Lianne

Re: The dreaded radiation mask

Posted by NotAlone on Sep 11, 2019 9:43 pm

The radiation mask today was really pressing down on my throat but I was told that my position “looked good” so I just sucked it up. About 5 minutes later, I knew they still hadn’t started the actual radiation but continued to adjust the table. 
They came back in, removed the shell, and adjusted the angle of my neck/head before replacing the mask. 
Wow. HUGE difference!  My nose was a bit squashed but absolutely no pressure on my throat!
 I wanted to mention this in case anyone else has issues. I didn’t realize the angle of my neck would have such a big impact. I raised the question at every treatment of if it was normal to experience so much pressure on the throat, and was told very placatingly that there was lots of “wiggle room”.  I think they just pictured me as a whiner. Now I realize that I was in a different position than I was in when the mask was made. 
 

Re: The dreaded radiation mask

Posted by Lacey_adminCCS on Sep 11, 2019 10:48 pm

NotAlone

I'm glad you keep speaking up about your discomfort and are finding solutions. 

Thanks for sharing 
Lacey