Metastatic thyroid cancer worrieshi

Morning BarbieAnne58, sorry to hear you are going through this. It's such a worrying time for you and awful having to wait 6 months for any answers. I'm not sure which variant of thyroid cancer you have, mine is medullary. I can't really help you with your questions sorry but I think you should try contacting your specialist nurse on your team and asking them for more information and help. I'm going to mention a few more experienced thyroid forum members who I think might possibly have lung mets and might be able to help but I don't know how active they are on the forum. Tomo and gardentree. I do hope someone will be along soon to help you more. I wish you all the best and keep us updated as to how you are getting on x

Thank you for your reply. I have papillary thyroid cancer. I don't have a nurse just the oncologist. Yes, I will let you know how I get on. X

I was under the impression that you should be assigned a Clinical Nurse Specialist who is your point of contact when you get your diagnosis. That was certainly the case for me. She forms part of my team with the consultant who was also my surgeon. Maybe it's different in different areas? Could you ring your oncologist secretary perhaps and try and get some help that way? Maybe try ringing the Macmillan helpline and see if they could help too. X

Ill try both, thank you x

Hi I was diagnosed with papillary cancer too in Sep 2023, I had surgery which one lymph node out of 16 was cancerous, yesterday I had ultrasound and they found abnormal lymph node probably cancer is back , my doctor said I can’t have biopsy or surgery until after 6 months of my RIA. Which was January. I am worried too , can I ask you when was yiur first surgery and how long did it take to spread to your lungs?

thank you

Hi, 

im live in Cornwall and have been diagnosed with follicular and Pillary thyroid cancer with bone met ( in my leg and hip bone) right and left side. I have had two courses of RDI 3.2 and the higher dose of 5.8  and they want to go again in may. I’ve also suffered with pins and needles. I feel okay at the moment, but I’m not sure what to expect and been told nothing in regards of what to expect. It seems different area tell you different things. if you wanted to talk you can always call me 07479849848 thanks Dean 

Hi, my first surgery was in 2016. Lung cancer was spotted in 2019. I have been really well up to now. 

1. Hi, I haven't been told anything either which is really quite frustrating. I will let you know if I have any further information