Hi everyone,
I‘m new here. I’m 34yo and had a total thyroidectomy 2 weeks ago for suspected papillary thyroid cancer, which has now been confirmed as multifocal papillary thyroid carcinoma following histology results. I was told that not only did I have a tumour on the right lobe, but also many little cancer cells on the left and also in my lymph nodes( I think she removed 4/5).
My ENT consultant has told me that I need discussing again in the next MDT and referral to another top consultant for ? Further imaging which would likely be a PET/CT. Up to now I’ve only had a neck US and biopsy and then the surgery. When I asked the consultant about the possibility of having mets, she said ‘that’s the thing, we don’t know’. This has given me a lot of anxiety. She did mention earlier on in the process that i could need radio iodine treatment so I now await for the next stage treatment plan.
Is anyone else going through something similar and can share their thoughts/ experience, as I feel very alone with this. Would be much appreciated.
Best wishes,
Jade T
Hi Jade/Jatier and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and although I'm not a member of this group I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Jade,
Thank you so much for sharing your story—it takes a lot of strength to open up, especially when you're still in that in-between stage of waiting and uncertainty. I just wanted to say that you’re definitely not alone.
I’m 21 and was diagnosed with papillary thyroid carcinoma earlier this year. I had a hemithyroidectomy in February, and because it had spread to my lymph nodes, I now need a second surgery to remove the rest of my thyroid, followed by RAI treatment. Like you, I’ve had to wait for MDT discussions and more tests to figure out the next steps—and that whole “we don’t know” phase is honestly one of the hardest parts. The anxiety can feel like its own diagnosis.
Multifocal PTC with lymph node involvement sounds scary, but it’s something a lot of us here are facing or have gone through. It’s also reassuring to remember that papillary thyroid cancer is one of the more treatable types, and RAI can be a really effective next step for both treatment and detection.
Please don’t hesitate to keep reaching out. This community gets it, and you don’t have to face the unknowns alone.
Wishing you clarity, calm, and strength as you wait,
Butterfly Resilience 
