Thyroid cancer?

[Chocolatebuttonanyone]

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.

Good luck tomorrow!

I'm waiting for another call from ENT, trying to get another appointment.

I fully appreciate its "slow growing" in most cases but without that certainty that it's benign it's difficult to move on. My FNA has some "bizarre looking cells" according to my doctor. Not normal then.

Anyone else very tired all the time?

I feel exhausted @BellsHolla but I think it's from all the worrying.

At what point can they rule out the more worrying kind of thyroid cancer? From the ultrasound? From the biopsy? I'd like to think it all moves pretty fast until that's ruled out. That is my ultimate fear, a) it is the rare fast growing basically untreatable one or b) it's been secretly growing there so long that it has already spread

Hello! Nope, nothing yet - it will be two weeks on Monday since the FNA so I'm fully expecting it will take til then for results, and then a further two week wait to discuss the results!

I'm trying not to dwell on it too much so have avoided this thread a little bit, but in a weird way, it's slightly comforting to know there's quite a few of us going through the same thing, and that you all therefore "get" it? My husband has accused me of too much gallows humour and got in a bit of a strop when I told him how much my critical illness cover would pay out if it was the worst news. Gotta try and find those silver linings and keep your chin up somehow, eh? 😂

I know what you mean, it's definitely easier to try and pretend it's not happening isn't it. Sorry for tagging you and making you come back!

Surely it would make sense for the consultant appointment to just be booked for 2 weeks or so after an FNA. Because when would there ever not need to be an appointment, and even if there didn't need to be then they could just cancel it! I sometimes think I could do a much better job of running the NHS!

Haha, aww your poor husband. But you're definitely right, humour is needed. I've also just remember I also have critical illness cover.... I really really hope I don't get to use it

@stresshead38 Don't apologise, it's fine - despite what I said, I am finding the thread helpful. My friend does have thyroid cancer and she'd be the logical choice to talk it through with, but she's having a really rough time at the moment and I don't want to put that on her. So it's just good to have the option of talking about it with someone else who understands what's going on.

Totally agree with your comment re: appointments too, but surely that is too effective a use of NHS resources?

As for the critical illness cover, I forgot we had it. It's decreasing cover based on our mortgage term so with only a handful of years left (and based on the 11k salary I had when we started the mortgage!) it wouldn't be a life changing amount, but it would certainly pay for a lovely holiday, lots of family treats, and bulk up our savings a bit.

I'm tired all the time but I've got absolute iron deficiency so I don't know what's attributable to what.

I've had appointments made for results, turned up and the results haven't been in (twice). The consultant only realised when he checked the computer just prior to me walking into his office. It's a bloody shambles but I work in the NHS so I know exactly what it's like.

Do not worry about anaplastic thyroid cancer, it's very rare and it grows so quickly that your breathing can be impacted within a few weeks, that's how rapid the growth is. It's very drastic and you become unwell quickly, you'd definitely know about it if you had it. I suspect my nodule has been growing for approximately 4 years which is when I first felt like I had a lump in my throat but you couldn't see or feel anything at that point. I did ask for my thyroid to be checked as I've had previous benign nodules 15 years ago but they dismissed it as reflux. Funnily enough now they've taken the lump out I no longer feel like I have a lump in my throat 🙄 you couldn't make it up.

It's been 3 weeks since I noticed mine.... but thinking back it's been months since I first thought 'my neck is thicker on the left' - (but I could feel a pulse so thought it was just the anatomy of where the arteries are)... but says it's been 3 weeks. Would I have noticed a difference in 3 weeks?

Also. Funny you say about reflux. I went to GP last year, probably aug/sep time with a pain in my sternum and palpitations- they put both these things down to relax and started me on omeprazole... only since starting the omeprazole have I ever felt actual heartburn. Now I'm thinking the other symptoms could well have been thyroid related 🤔

@Stillwaitingallyear that's really terrible. Could have saved so much nhs (and your) time. I work NHS too, but in a GPs - so I don't see a lot from the other side.

@NoddyTheNodule I like talking to people who get it to. I'm trying to protect most of the people around me from the worry so it's good to be able to chat freely here.
I've no idea how much our critical illness pays out. Just one of those things I did when we bought the house and had kids. I'll look in to that if I need to.

@stresshead38 I was exactly the same for about a year wondering if I could feel something or not and then deciding it was just my neck. It wasn't until I felt a definite lump that I got booked in at the GP and even then I thought they'd say it wasn't.

I also didn't get reflux until they put me on reflux meds! It's because your body gets dependent on them but PPIs are terrible for you and limit vitamin and mineral absorption. I'm now osteopenic as well as in absolute iron deficiency and I'm sure the PPI has contributed. I've had my dose reduced and slowly weaning off it. If only they'd listened to me 4 years ago when I asked them to check my thyroid 😡 I really wish I'd been firmer but life is busy and I couldn't be bothered if I'm honest, I hate being faffed with & avoid doctors and health stuff like the plague. Lesson learned.

Good luck for today everyone, one step closer!

@Stillwaitingallyear luckily I was only on a very low dose so have actually almost completely weened myself off. I try to manage any flare ups with gaviscon instead.

It was totally the life is busy thing that stopped me going. Also it was such a non descript complaint and I was worried it was an anxiety thing so didn't want to bother them.

Yes good luck everyone xx

I am also anaemic. Waiting on an actual iron blood test to see what that says

They are waiting on my thyroglobulin level to come back and that can take six weeks. Lymph nodes came back as reactive in the left and probable cancer in right but will have to be removed (if they can as it's in a difficult place) Apparently my surgeon is away hence delay. Will also need more RI treatment.

I'm sorry, not the news you wanted. But at least you know.

My appointment has just been cancelled. I can't believe it. I was so geared up for it. Emergency surgery required. They've booked me in for tomorrow now instead but now I've got to tell work which I was hoping to avoid 🤦🏻‍♀️

What does it mean by reactive? X

Could mean an infection. You know when your lymph nodes react elsewhere when your poorly. Armpit? Also I have an autoimmune disease so it could be linked to that.

Ah ok, I understand.

How are you feeling?

@Stillwaitingallyear have you gone in for your appointment yet? Or still waiting?

I'm so sorry @Stomacharmeleon - more waiting must be driving you crazy.

@stresshead38 I feel ok as I know what's going on and what their thoughts are. She is pretty straight talking which I like.

Finally home! It's good news in that it's not cancer but a naughty nodule that had got out of control. My thyroid is swollen which they think has set them off again. There were some cell changes so it was better off out of there. I'm a little bit annoyed as my next biopsy is March when we'd agreed 6 monthly but at least I can forget about it until then now.

I'm so sorry that your appointment was cancelled @stresshead38 I know how difficult that is. Hopefully it'll go ahead tomorrow.

@Stomacharmeleon sounds like you're pragmatic like me, better off knowing the facts and plan from there. I hope they have all the results for you soon.

I'm glad you're okay @Stomacharmeleon. I prefer straight talking too. The person I was meant to see today is pretty straight taking (from what I've read in his letters to patients at work), but now I'm seeing someone else tomorrow who I've not heard of before.

That's great news @Stillwaitingallyear - I'm so pleased for you that it was ok, and that removing it was the correct decision.

I feel more stressed now because my parents are now asking for updates, and my sister (who lives with them), plus work now have it on their radar... and I was just hoping to process everything in my own time before filling others in

Urgh updating people is a nightmare isn't it? I'm doing that now. I was lucky in that I was able not to tell people until I made the decision on surgery as I knew I couldn't hide that (apart from the kids of course, they only knew it needed to come out but not why and now they don't need to know). Fingers crossed for tomorrow.

That's what I was hoping to do! But alas here we are.

The cell changes that were found in yours - would they have turned cancerous?

They couldn't say with any certainty but described it as having gone rogue! It wasn't massive but they think it would have continued to grow so on both counts it was best for it to go. I may have just kicked the can down the road with the left hand side but I don't regret taking the gamble as it's still functioning which is amazing news. Even if it has to go in the future I'm pleased I've still got it now. Never in my life did I ever think I'd be talking about my thyroid like this 😂

I'd never really even thought about my thyroid until 3 weeks ago!