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Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

Papillary Thyroid Cancer lvl3

Rosie0511
Posted by

Hey everyone, I had my TT Thursday 25.6 I’m waiting for results from tumour and thyroid but have been told I will more than likely need the radioactive iodine treatment. I don’t know what to expect, still trying to get my head round the fact I’ve got cancer, other than a painless lump in my neck I was completely healthy. 

JC13
Posted by

Hi Rosie

i hope your recovery from the TT is going well and you are not in too much pain.

i have my RAI in a couple of weeks so will let you know how I get on after that.

Make sure you get plenty of rest.

best wishes

Jan
Rosie0511
Posted by

Hi Jan

thank you for your kind words, I’m doing really well, haven’t really suffered with pain at all, just a bit of discomfort. I’m just so tired, sleeping so much, I have ME too and am seriously wondering whether this has affected that. I’m told I will likely have the RAI too, Doctor describes it as a magic bullet. I’d love to hear your journey and experience, I’m very hungry for information, I was literally told I had this and had op 8 days later, guess I’m still processing it all. I feel bewildered with it all, guessing all will be revealed next week when results from tumour and thyroid are back. I feel very anxious and alone and haven’t been given any information, was so pleased to find this site and be able to gain a bit of understanding.

Valerie

Runner25
Posted by

Hi 

i had a TT and RAI last year. 

I found RAI very easy, the idea is you swallow a radioactive iodine pill which causes any remaining thyroid cells to absorb the iodine and die. Prior to the treatment you get 2 injections of thryrogen which makes the remaking thyroid cells “hungry” for iodine and that is why they absorb the radioactive iodine.  Most hospitals recommend that you go on a low iodine diet for 2 weeks prior to treatment, my hospital doesnt, so I didn’t bother. You get put into isolation in hospital which is a dedicated room, after swallowing the pill you are left, my meals were left outside. I was in for 2 days and it was fine, I had slight discomfort in my neck and felt sick. They monitor you radioactive levels and once below a certain level your can go home. I live in Scotland and on release I had more restrictions than those in the rest of the UK- although after 10 weeks of lockdown it’s very similar! 

Had a few problems with my thyroxine levels in January and February in 2020. I felt exhausted and resting heart rate was down to 44. Contacted my consultant, arranged bloods and my T4 was too low. Medication was changed and felt good since then.