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Original poster

Thyroid cancer?

273 replies

Chocolatebuttonanyone · 18/07/2023 20:10

I have a nodule on my thyroid. Just been seen under a 2 week wait and there is a 20% chance its cancer.
Shit shit shit.
I know that means 80 percent that its not, but I probably need a hemithyroidectomy anyway.
I cant deal with this right now. I dont know what to do.

OP posts:
stresshead38 · 18/12/2023 10:20

I haven't had any results, but I have seen I've got an appointment booked on patient knows best with ENT in May! So I'm guess they're not too concerned about me....

stresshead38 · 20/12/2023 20:34

I've seen the letter on my patient access page. It says a 'benign follicular nodule' and good practise is a follow up ultrasound in 6 months.

NoddyTheNodule · 20/12/2023 20:37

stresshead38 · 20/12/2023 20:34

I've seen the letter on my patient access page. It says a 'benign follicular nodule' and good practise is a follow up ultrasound in 6 months.

So, so pleased for you! How are you feeling?

It is disappointing that this is how you've had the news, though, I have to say.

stresshead38 · 20/12/2023 20:41

The letters addressed to me, so I presume a hard copy is on its way in the post... but yeah, after all that worry it does seem a bit strange to find out like this.

I feel ok. Obviously pleased that no cancer was found. I was so convinced it was that a little part of me is still thinking 'but what if they've missed something'. Does that sound silly?

NoddyTheNodule · 20/12/2023 20:45

No, I don't think it sounds silly at all. That's actually my biggest fear about a needle biopsy! This is why they do multiple samples though and use the ultrasound to identify areas of "interest" to sample from.

I've resigned myself to not hearing anything before the new year, now. I'd hoped to get my GP to try and push from their end but unsurprisingly, I can't get an appointment.

stresshead38 · 21/12/2023 07:12

Have you logged in online to check your record? I didn't get notified there was anything there, just looked on the off chance.

stresshead38 · 21/12/2023 18:26

I got a letter in the post today saying 'diagnostic tests show no signs of cancer' - a different letter to the one online

stomachameleon · 21/12/2023 18:58

@stresshead38 I am really pleased for you.

Stillwaitingallyear · 21/12/2023 19:15

@stomachameleon I'm just catching up. Sorry to hear you've got to have more treatment, what a blow! I hope it goes as smoothly as possible for you.

@stresshead38 Brilliant news, I'm really pleased for you.

I got a letter earlier in the week and it all makes sense now. I was on a hiding to nothing with the type of atypical cells that I had, so removal was definitely the right thing. The issue will be if I have the same on the left side as I may have a difficult decision to make if so. Biopsy will be in March so I'm not going to think about it until then. He's said I'll be rediscussed at the complex case thyroid MDT which is good as it means that all the different specialists will be in the room at least. So it continues but I knew what I signed up for when I agreed to a hemi so I can't moan about that now!

NoddyTheNodule · 21/12/2023 20:10

stresshead38 · 21/12/2023 07:12

Have you logged in online to check your record? I didn't get notified there was anything there, just looked on the off chance.

Yep, nothing there. No test results or letters. Not thinking about it now until after Christmas.

stresshead38 · 22/12/2023 08:33

@Stillwaitingallyear @NoddyTheNodule I completely get not thinking about it until the new year. I'm not going anywhere and will be waiting to see how you get on. I imagine I will need regular checks on mine now anyway, so will still be in the ENT world.

NoddyTheNodule · 28/12/2023 20:46

Had a bit of a whinge to my GP during a phone appointment today about the lack of results and the gatekeeping by the consultant's secretary. She looked on the hospital system for me and said that results are there, but she couldn't access them as they don't appear to have been reviewed yet by the consultant. She agreed that it was a pretty poor experience (especially in regard to the secretary refusing to even take my details or pass on a message) and asked me to leave it with her whilst she chased it up. I don't know what she said, but am hour later, the secretary was on the phone booking me a face to face appointment for next Friday to discuss results!

poetryandwine · 29/12/2023 00:06

Well done, @NoddyTheNodule ! Good luck for next week

stresshead38 · 29/12/2023 15:45

Oh well done @NoddyTheNodule - I'm glad you've not got too much longer to wait

stomachamaleon · 29/12/2023 16:47

Good luck! Keep us posted. I am glad you have finally got somewhere.

Stillwaitingallyear · 31/12/2023 09:04

@NoddyTheNodule that's great news, pleased you're finally getting somewhere. My entire experience was not dissimilar to yours, an absolute bloody shambles! Fingers crossed for Friday, sounds like you have an excellent GP.

stomachameleon · 31/12/2023 11:53

My appointment has been out Back From the 4th to the 31st as surgeon is off sick. It's so frustrating. Available if I want to see him privately mind you!

FormerlyPathologicallyHappy · 31/12/2023 12:17

Your not allowed to take NHS sick leave and work privately.

stomachameleon · 31/12/2023 12:23

Well someone is fibbing then as I can see him... and my appointment was cancelled as he is off sick.
I have no reason to make that up.

stresshead38 · 31/12/2023 16:01

@stomachameleon what?! That's outrageous!
As in you could book to see him privately the same day your appointment would have been on the NHS? If so that's not right!

If the private appointments are say the week after then maybe it's just that the NHS ones that week are booked up, but private isn't?

stomachameleon · 31/12/2023 16:04

Perhaps your right. I will be asking as the oncologist mentioned it as well when she asked if I was seeing him. Perhaps it's a pre planned thing or he has others working under his umbrella.

poetryandwine · 31/12/2023 16:16

I hope you get a satisfactory explanation, @stomachamaleon

stresshead38 · 31/12/2023 16:35

Definitely ask, you deserve an explanation

NoddyTheNodule · 31/12/2023 19:03

I'm really sorry @stomachameleon - that's incredibly shit.

NoddyTheNodule · 05/01/2024 20:41

So, the results of the FNA are benign. However, I saw a different consultant today who pointed out that only a very small portion of a very large nodule was shown to be benign, and he wants me to have the biopsy done again with more samples taken this time. So, not out of the woods yet. I bloody knew this would happen, and that was the reason I was referred directly for surgery in the first place! He also said that the nodule will almost certainly be coming out anyway due to the size, rapid growth, and it pressing on my windpipe.