Papillary thyroid cancer in lungs

Hi Tom89,

just wanted to welcome you to the forum, yes you're in the right place but of course sorry you find yourself here. Sounds like you dealt so well with it all previously, those scan results are bound to have knocked you after nearly getting back on track and getting your head around it all.

I get what you mean about the feelings of betrayal in your body. It's a broken trust that I for one am finding hard to gain again and I think I will always dread the scan results and for my variant (Medullary) the calcitonin blood tests. I'm sorry I can't really help you with the RAI as Medullary doesn't respond to it but I'm sure someone will be along soon with advice.

I think Abbey01  posted about being in a similar situation recently and Tomo  might be in a position to give you some guidance although I don't know how often they check in.

Do let us know how you get on.

Hi 89tom,

I’m sorry to hear about the uptake they have detected in your lungs. I completely understand all the feelings you’re are experiencing, I feel the exact same way. 

My lung nodules were discovered in a CT scan before I had RAI. Following my RAI they also saw uptake in my rib bones which I have found very hard to deal with. 

I’m still learning but from what I understand it is good news that your lung nodules have taken up the RAI. That hopefully means the radioactivity is working away and doing its job. 

The RAI is the main course of treatment, if RAI ever stopped responding there is also a drug which can be used. The waiting is hard but over the next 5 months your recent RAI dose will be working away. 

The hospital I am being treated at has a Maggies Cancer Support Centre, if you have one locally to you I would suggest popping in for a chat and a cup of tea as I found this really helpful following a recent hospital appt. 

Thank you for your response its appreciated to know im not the only one feeling this way. Thanks for welcoming me.

I will look into maggies cancer support. Having a chat with them sounds like it would be beneficial.

 89tom 

hi both 

I’m sorry to hear about your diagnosis. I’ve also recently had a ct scan where the found nodules in my lungs but they said they weren’t sure if it was cancer. Can I ask how they knew for sure with yours? Was it over after the radio iodine? My treatment is in January. 

Hi, sorry you're going through this, the waiting to know isn't nice. For me after the RAI in January some iodine was taken up by my lungs and that with the high res scan to find the nodules convinced them it was the cancer had spread. 

I've just had another dose of RAI last week and some new scans so I'm waiting to see if I'll need more RAI.

Crossing my fingers for your treatment in January. If you have any qs about it I'll help where I can.