Thyroid cancer? Urgent surgery requested

[Ladybughoping]

I’m just wondering if someone can calm me down a bit. Sorry if this is long!

I have had a goiter which was first biopsied in 2016 and from memory it was about 2.5cm. They really struggled to get clear samples and the aspiration had to be repeated 3 times, which was so traumatic by the end and it sort of put me off pursuing anything. I was told it was fine to leave, but about 18 months ago I felt it was growing and so had an ultrasound which showed it had grown and was 4.5cm. They referred me, but because of waiting times, I was only seen about 3 weeks ago.

The consultant said because of the time lapse he would like to repeat biopsies / ultrasound, and this was done 2 weeks ago (a lot less traumatic this time!) He said the results from the first time were “3” and this was boarderline and it should have been checked sooner. I was surprised to get given a surgery date of a week later and called them to explain I was on holiday and they said they would reschedule

im still on holiday now, but the hospital called this afternoon and tried to book me in for the day after I get back in the country. He then said he needed to check, as they don’t like to do surgery after you have flown. He said he would book me in for 3 weeks after I return, but was going to try and rearrange the weeks before patients to see if I could have surgery sooner “as your case is much more urgent”

I haven’t had my results so I don’t know why I’m more urgent, I called the doctor and they haven’t had the results yet, the man on the phone said he couldn’t see my results but my notes had been marked as urgent. Apparently they are having a meeting tomorrow to discuss cases and see whether the consultant would like to waiver the 2 weeks after flying rule to see me sooner.

im now an anxious mess - to me it sounds like the results are bad (I know generally thyroid cancer is a “good” cancer to have) but having no conclusive answers is really hard. Can anyone talk me down or give me their experience please?

Also, has any one had the surgery and can tell me how soon I can drive after the op? I know surgeon has said 2-3 weeks recovery, but logistically not being able to do school runs is a nightmare!

He said the results from the first time were “3”

Do you mean the tumour was grade 3?

The urgency will be based on how much difference they think it will make to operate sooner rather than later.

Can you get others to help with the school run or use a taxi?

Thank you for replying, I’m a bit all over the place tonight.

im not sure what he meant - he said the results from the first biopsy were “3” which is borderline. He might of said a letter before the 3, but I had DS with me and there was a lot of info to take in.

my DH can help with school run, or potentially DS could flexi board. It was just an idea on timescales as I’m hoping to minimise disruption as much as poss!

I’m waiting for thyroid biopsy results at the moment so you have both my sympathy and empathy!

The radiologist who took my biopsies explained that there are 5 levels of thyroid lesion (U1-U5). U1= normal, U5= definite malignancy. U3= borderline (which I think is what they meant for you, and also where the radiologist thinks I’m sitting based on what he could see on the ultrasound.)

I hope we both get some answers soon. I called to chase my results yesterday and was told there’s a backlog in the reporting of biopsy results, could just be my part of the country (although of course we could live in the same area!)

Sorry I didn't mean to sound unsympathetic.

I'm not familiar with the 2 week buyer after flying- did they say why?

Is there a nursing team you can speak to?

Likely to be DVT risk. Both flying and surgery increase the risk.

I’m sorry you’re on the emotional rollercoaster that is dealing with a thyroid diagnosis. I’ve been where you are and I know it’s very anxious. I’m not sure what’s going on with your FNA results and your diagnosis but in my case because neither the ultrasound or the FNA were definitive, they decided to remove the lump (mine was a similar size to yours). It was only once they took it out that they could give a definitive diagnosis. Recovery after surgery was uncomfortable but manageable with over the counter pain relief, I think it was a fortnight for driving, it was something to do with insurance.

There is lots of good info on The Butterfly Trust or MacMillan if that’s any help?

Thank you so much - the U3 was the letter and that makes sense!

I hope you get your results soon - keep me posted? The waiting is horrible! I feel like someone must of seen my results in order to make the surgery urgent - the doctors haven’t had them though so god knows what’s going on!

don’t worry @Pistachiochiochio i didn’t read as unsympathetic! I don’t even know who I would call as I’m in a limbo between departments at moment I think.

being on holiday is not the best place to get this news as I feel like I can’t talk to anyone to get answers.

Was yours benign can I ask? I will definitely have a look at the butterfly trust and Macmillian. I’ve been wary of googling as I’m aware I might not get the answers I need. I’ll account for 2 weeks of not driving in my plans, thank you - I think I’ve gone into logistics mode to try and regain some control!

Everything seemed to be very chill up until the last biopsy, which is why I’m now panicking. The fact they want to do the surgery urgently and have said they are trying to rearrange other patients for the week before / are having a meeting to discuss waivering the 2 week rule makes it sound like they know something I I don’t about how quickly I now need the surgery?

Thank you so much for all replying, I’ve so many questions and not many answers at the mo!

You are absolutely doing the best thing not googling.

I got the inconclusive results of my FNA on 1st Jan and had my surgery on 8th, I think a lot of it was to do with the size of the tumor, it was 5cm and pressing on my windpipe so it needed to come out regardless.

Mine did turn out to be cancer but I honestly don’t think anyone knew until they’d removed the lump, as I understand it the odds are still very much in your favour in as much that most of these lumps aren’t cancerous. I can explain what happened post diagnosis if you want to know but not if it would be unhelpful or frightening for you.

Ah thank you, no please tell me what happened post diagnosis / surgery for you, as I think from this reaction I need to prepare myself for that course of action too. I don’t want to Google, but if you are happy to talk mw through it id be really grateful!

Thats actually really reassuring that your surgery date was so quick as well. I suspect mine is a similar size to yours so im hoping that could be the cause of the rush!

im really grateful to you for replying, thank you so much ❤️

I'm so sorry you're going through this!
I'm waiting FNA results too.
I had it 4 weeks ago and still waiting. It's horrid having to wait.
But on priority waiting list for surgery as mines 4.5cm too and I'm having difficulty breathing and the ultra sound and CT scans showed it has malignant characteristics.

Sorry I can't offer much advise but I just want you say I hope your get good results and the surgery goes smoothly for you.
It's such a worrying time and I know this is easier said than done but try enjoy your holiday as much as you can

I will! And I’ll keep checking on this thread for your updates too 🥰

The most helpful person I’ve spoken to so far was the ENT cancer pathway coordinator (I found her number on the letter from ENT), spoke to her on Tuesday and had a bit of a cry down the phone she was lovely and has said to call her back tomorrow so she can chase the report again for me, I’m 23w pregnant so this is the last thing I need!

Okay so I had the first surgery to remove the lump, I stayed in hospital one night and recovered well. I got the diagnosis of follicular thyroid cancer three weeks later and was referred for surgery to remove the other side of my thyroid (I don’t think they always do this, depends on certain factors) surgery was fine again and I got confirmation a few weeks later there was no cancer in the other side. I then had a dose of radioactive iodine therapy a few weeks later. Again, not everyone has RAI, it depends on certain factors. It sounds scary but it basically involves taking a tablet and staying in isolation for a period of time (not more than a few days) while it works its way out of your system. I then had some further tests which confirmed a complete response yo the treatment. This was six years ago, I still have check ups and I take 150mg of thyroxine every day but I’m absolutely fine and lead a completely normal life.

I hope it’s helpful to know a little more, hopefully it’s all irrelevant and your lump is benign.

Another in the U3 wait - I had an ‘unconcerning’ FNA earlier in the year, long wait for clinic where the consultant wanted a core biopsy - done a couple of weeks ago. Large nodule around 6x4 cm but few symptoms.

So sorry I can’t really help with your questions but it does sound like there right people are reviewing your results and planning the right next steps.

i had a separate gynae investigation earlier in the year and the speed I went from clinic to hysteroscopy under GA to mri did worry me, but at the end of it all, I had a letter saying nothing of concern.

So the NHS can move fast to rule things out, try not to worry too much.

Hi Op what was your outcome?. The thread ended and no one continued the conversation... hope it was good news.

I’m sorry, I have just seen this and the other replies. Thank you for checking in with me, I don’t know how I missed the responses so my apologies.

ive had the surgery a few weeks ago and had the results that its minimally invasive follicular cancer. So, plan now is a CT scan, more surgery to remove the other half of my thyroid, and then probably radioactive Iodine treatement. We are still in a bit of shock as it’s happened quite quickly, but I feel like I’m in safe hands and the team around me are good. NOT looking forward to having the surgery again though, it wasn’t the most fun!

Thank you for your reply and I am so sorry that you’re going through this, I can imagine it was a massive shock. I hope you recover well and it’s all behind you soon. I have thyroid nodules and on a long waiting list for scan and biopsy. Please keep us updated.

Ahh OP, sorry to read this update 😫

I’ve also had my results back since we last spoke and need to have a diagnostic partial thyroidectomy too as my biopsy wasn’t enough to diagnose. I’m glad that things are moving speedily for you, even though it’s not for a nice reason! ❤️

Hi Ladybug I just came on here to see how you are?. Have you had your operation? Hope things are good.