Papillary Thyroid Cancer

[marshamallow321]

Hi. I’m 32 years old and just been told I have/had thyroid cancer.
I’ve had a slow growing lump since 2019 and an ultrasound showed benign.
fast forward to Oct 2024 after giving birth I developed postpartum thyroiditis and the lump swelled very quickly compressing my airway.
CT scan showed no characteristics of cancer and my lymph nodes and vocal cords were fine.
surgery done in January 2025 to remove the mass and half my thyroid. Surgeon told me he wasn’t concerned of any cancer from what he saw and then the waiting game for the results.
fast forward to now and I’ve been told the mass contained Papillary cancer… 5 months later!
he’s telling me it was all removed during surgery and hasn’t spread but I don’t believe them. It all seems so off to me and I can’t think straight and my head is all over the place. I have 5 children to care for and I’m so so scared. I’ve been told I’ll need the rest of my Thyroid removing and need Radioactive Iodene Treatment and have a CT scan next week. I’m so scared

🧡

Oh bless you, first of all, take a deep breath. I had my goiter biopsied in 2016….. they were meant to tell me my results were undetermined and that I needed half removed, but I got lost in the system. I went back to doctors last August and had another biopsy as I felt it had grown. My consultant said he definitely wanted it removed and I had a hemi, with a later diagnosis of follicular thyroid cancer which had broken the encapsulation. I had to have all the scans like you to see if it has spread, and was terrified as so much time had passed since it was first biopsied. Long story short, it hadn’t, and I ended up having a completion just before Xmas, and my RAI 2 months ago. I’m on thyroxine now, and whilst this year has been a bit brutal, I’m very much on the other side now and things are calmer again. I’m having 3 monthly checks for the next 12 months, and then they will do a risk assessment to see if I can go Down to every 6 months.

im assuming your cancer was encapsulated which is why they are so confident they have it all. Thyroids are good for that as they can just scoop them out. I absolutely understand the panic, but trust in the statistics and what your consultant is telling you. If you have any questions I’m happy to tell you what I know from my side. Have you been given a cancer nurse? Mine was invaluable in answering all my questions x

My sister had papillary thyroid cancer at 19. They told her at the time that some huge number of people die with it but not of it, they have it for years and never know because it's very slow growing and would have taken many many more years to cause a problem.
Anyway, she had it removed, had the radioactive iodine (that wasn't great, she had to be isolated for several days and chuck everything she took in with her because of the radioactivity, but it didn't make her sick or anything). She's never had any recurrence and is completely fine 22 years on. I really truly think you don't need to worry.

Hi, just wanted to extend solidarity and a hand hold, I’ve just been diagnosed too (34 and I have a 20 month old) and have similarly been really scared and upset. Do you have your surgery date yet / have you already had it?

The waiting is so hard, I’m awaiting my surgery date now, but I’m really encouraged by how confident the consultants I’ve seen have been, and that the prognosis is generally so good.

You’ve got this, it’s going to be hard but it’s going to be ok ❤️

Oh and I’ll be having RAI too, let me know how you get on ❤️