Struggling with eating/coughing/choking after radiotherapy

Hi Gelli

Welcome to our little community

Do I understand correctly that you had six weeks of external bean radiotherapy then eight or so months a course of radio iodine?

I'm afraid I know little about radio iodine. That's more the province of the Thyroid cancer group which you can find by clicking HERE

RT to the throat can cause fibrosis of swallowing muscles and any sort of radiation induced fibrosis can be progressive and show up as a late effect so my suggestion would be to contact your hospital to get a swallow test. 

I hope you find an answer to what must be really concerning you.

Thx so much! I have consultant appointment tomorrow and list of questions - have joined thyroid cancer group too!

best wishes

Hi Gelli,

I'm sorry to hear eating is causing some problems for you, it's always such a worry when when we get problems well into our “expected” recovery. Although as I've learnt the hard way, it's difficult to predict what recovery should look like for each of us as our cancers and surgeries are all so different.

If it helps you I had a similar experience at 13 months post TT and neck dissections, I became aware of what felt like something new in my throat, like a lump stuck permanently in my throat causing me to have to eat and swallow more carefully to prevent coughing. I contacted my CNS and got a referral back to my original post-op swallowing team who did an assessment. I then had an ultra-sound and (eventually) a scope from my consultant who reassured me the scan was okay and he couldn't see anything amiss with the scope and suggested maybe it could be down to changes in scar tissue. Now at 20 months and reassured it's not a “problem” I've adapted to it and now no longer think about it when I eat and my eating is back to where it was post surgery. I wonder if my obsessing over it made it worse, causing my throat to get even tighter when I swallowed?

Hopefully your consultant will put your mind at rest at your appointment tomorrow too. Meantime if you have worries in future, do you have the details to contact your CNS? Mine has been invaluable in helping me and liaising between my consultant.

Had your cancer spread outside your thyroid? I see you had radiotherapy and then RAI so presume the RT was for spread? Perhaps if you get a chance you could put a short history in your profile. I didn't have RT and my variant doesn't respond to RAI so I can't help with that I'm afraid.

Anyway hope this has been of some help. I'm on the thyroid forum aswell, so as Dani says if you post on there, hopefully you'll get some more advice. Hope you get answers in your consultant appointment. X

Thank you that is v helpful - funnily enough when eating on my own it doesn’t seem to be such a problem - in front of friends/family it seems to be worse!! And it is such a slow process - perhaps I’m hurrying too much!!!

I will update my profile as you suggest 

I'm exactly the same! When I eat with others I'm so much more conscious of it and always have to drink water and go (annoyingly for me) slowly. I've learnt to do smaller portions so I finish at about the same time and have retrained myself it's okay to leave some uneaten (which goes completely against my upbringing of “if you don't eat all your dinner you won't get a pudding” haha!) I found watching a TV program while I eat helps too. Guess it distracts the brain! Best wishes x

Thank you again k9crazy!  Good to know I'm not the only one with this predicament - and good tips too!

Take care

G :-)