Sarcoid response in chest?

That all sounds pretty good Trev although incredibly frustrating that you weren't given the opportunity to ask any questions.  Do you have a clinical nurse you can contact who may well be able to answer some of your queries?

I didn't get any scans after my treatment so can't comment personally on areas lighting up but I have heard many people mention this and they're generally fine.  I'm sure you'll get some more in depth responses in this regard.

As to a sore mouth, I still get blood blisters, cuts, sores etc in my mouth and on my tongue if I eat something that is too difficult and I'm over 2 years since my treatment. 

Fingers crossed for you.

Linda x

Yup, it does sound good linda thanks, i just wish he would have let me ask a few questions, i was in there for less than 4 minutes total!. For example i would really like to know what a sarcoid like reaction is, without googling it and winding myself up as a result :)

I do have a clinical nurse, but no idea of her number, ill have to check all my paperwork- im reluctant to call anyway with them all being so busy etc with covid.

Sorry to hear about your mouth! but it is reassuring- it probably is me being over adventurous, i probably shouldnt have sat and eaten half a pigs worth of crackling on sunday ...and then 2 massive steak pies with loads of roasties on tuesday ...ive actually gained 2.5kg in the last 4 weeks :)

Thanks again.

Hi Trev. 2 years down the line I can make my mouth sore with crusty bread so its an almost given that pushing too hard on the food front will do it. Chill about the sarcoid like reaction. These are common findings after some sort of assault, commonly an infection at some time in your life. Radiologists are trained to spot them.

I had pneumonia 5 years ago dani, i was seriously poorly with it and hacking up tonnes of blood (i narrowly avoided hospital) so you are probably right, i do think consultants should explain stuff to us though!

I never realised our mouths stay so delicate for so long! but its much better to the alternative

I will indeed chill :) 

Sorry Trev.  Your food intake just made me chuckle!!  Hope you enjoyed it despite the aftermath!! x

Haha its ok linda :)

Upon reflection pork crackling 3.5 months after radiotherapy is probably not on the 'recommended list' of foods to eat :) but yes- it was absolute heaven, as was the crackers and stilton the same night :) 

Since regaining my sense of taste i ALWAYS want to eat i need to watch it or i will be the michellin man in months :)

Trev

Hi Trev Sorry you had  a rushed appointment at such a critical time it’s really unfair. Congratulations on complete metabolic response that’s as good a response as we can all hope for. Like Dani say I too can get ulcers but if I eat something new or crusty so in wonder at pork cracklings this early in treatment. Still remember your early postings when you thought about not having any treatment at all.Youve come a long way since then 

If you have any concerns your c n s is there for you irrelevant of covid ,again as Dani says re the sarcoid like reaction if you had pneumonia 5 years ago the radiologist could have picked that up. There’s been a few in the forum over the years with similar findings, all turned out ok 

so celebrate tonight maybe not with a chilli or a vindaloo though.

onwards and upwards Hazel x

Aww thank you hazel, i really appreciate the responses, this site has become like a mini family in some ways and it is brill having somewhere you can vent and be open about your fears etc.

Thanks again.

Hi Trev you’re welcome. We are a mini family who support each other at least something good has come out of cancer diagnosis for all of us can’t beat first hand experience! 
keep in touch Hazel x

Well i called my nursing team in the end to ask what the reaction they saw on chest was, and it was very reassuring to speak to them (first time ive actually called anyone!)

One daft question (and yes deep down i know its daft), when i had the scan i was going to remove my surgical mask as i wasnt sure if the noseguard strip was plastic or metal... the technician told me there was no need... presumably if there was metal causing scan artifacts / blind spots it would be obvious to the person reading the scan?