Diagnosis post hemithyroidectomy

FormerMember over 5 years ago

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Hi all,

Prior warning for the rather long brain dump of a post, you might want to grab a cuppa (or a glass of something!) before getting comfy...

Had the news yesterday during my post op check up with the consultant that the supposed nodule removed with the left side of my thyroid was actually follicular thyroid cancer. Was very unexpected as diagnostic ultrasounds were normal and fine needle aspiration showed benign cells so was just put on the waiting list for 6 months for the surgery, after I insisted I wanted it removed rather than to wait. Turns out I'm glad I insisted now!

It was a bit of a daze after being told that and I didn't think to get them to write anything down for me and was alone having driven myself for what I thought was a standard check up. But I believe what they removed was just over 2cms, they are happy with their margins and believe they have taken everything out and it hadn't invaded any blood vessels. So no follow up treatment but consultant wants me to have an ultrasound scan 3 months post op and 12 months post op to keep an eye on things. And I feel like if they were fine then that would be it... bar the blood tests done by GP to check function of the other half.

I've had a little time to digest things and have had a bit of a lurk on the forum last night and today before I felt ready to share. I have a large immediate family so felt drained going round to visit and tell them all yesterday and wasn't in the head space for people interaction today, which work have been brilliant about so I could work from home. Very glad to have a manager who is more like my work mum! She sent me straight home yesterday, with the option to stay if I felt I wanted to, and agreed right away for me to work from home today and checked in this afternoon to see how I was and let me know I could WFH again tomorrow if I wanted.

I know it's great to be told that it's all past tense and I had cancer and it's now all been removed but at the same time, I've still just been told I had cancer! I feel like psychologically I haven't had time to go through the process of finding out and coming to terms with it, having the treatment and then that expected relief that now you're 'cancer free' because it's been removed. So it's all just gone a bit too fast and I'm struggling to catch up to it. Add to that I found out the day after my 30th birthday throws in all sorts of other emotions, there was me thinking that maybe 30 wasn't going to be as bad as people said...! (Try being 30 they said, it'll be fine they said!)

I think the main thing I am stuck on at the moment is due to the fact that when I had the surgery, unless they knew something I didn't (which I don't think they're allowed to with regards to things like your healthcare!) how do they know that they got it all, how did they even know that they should be looking for anything related to cancer when we thought it was benign. I know their standard process is to send it off once it's removed to be tested, but surely if you're not looking for it you could miss something that might be related, no?! I almost feel like they should do some sort of scan just to double check.

Then my brain goes on to the follow up being ultrasounds, my previous ones didn't show anything untoward in the lump so how do they know it would be any different this time? And 3 months then 12 months post op, 3 to 12 seems like quite a big jump, should there not be one in the middle too?

I have the BRCA 2 gene and have known I have that for 12 years now, so part of me was almost prepared for something like that but thyroid cancer was not in the box of allowed cancers! I have also been around extended family who have had 'worse' cancers and had to go through some quite gruelling treatment and I almost feel like I shouldn't be so worried or get so hung up on it because it could be much worse. But it's still cancer at the end of the day. It was there for over 18 months without anyone knowing and I was just waltzing around with it in my neck like we were old friends and it was fine!

Then I've had quite a mixed reaction from friends and family. They've been very supportive, but I almost feel like it's been brushed off because I didn't know about it before it was removed. So almost like in their minds it doesn't matter because it's not there anymore, very much 'You did have cancer, you don't anymore so that's fine, carry on.' Which if that helps them fine, but just makes me feel a bit alone and rushed to move on. And I know they mean well but if one more person tells me to 'look at the positive, it's all removed before you even knew', I might scream!

Has anyone else been in the same boat with diagnosis post op? I mean it didn't even cross my mind considering that two ultrasound technicians didn't believe anything was wrong, the first one even showed me his thyroid against mine on the screen to show that even though I had a lump it looked very much like his in comparison so would be considered normal and I had nothing to worry about! And the fact the consultant thought the same. Along with the benign FNA results, you'd think that the test of the actual cells in the lump saying 'nope, no cancer' would be correct...! The consultant said it was quite rare for this to occur, I told him that it would be with me, I'm special!

So it was very much a shock, The consultant was great though and there was a macmillan nurse in the room and we went off once the consultant was finished to carry on talking and she went through a lot with me and I have a follow up call with her next week. But it just feels like so much doesn't apply because I've skipped steps that there isn't much guidance on how to deal with it.

Thank you for sticking with me if you've got this far. I'm not even sure if I'm looking for answers at the moment or if I'm just trying to wade through the noise in my brain. I quite liked the first few seconds when I woke up this morning and forgot all about it.

I'd say I'm happy to join you on this journey but I think we'd all be glad if none of us had to be here in the first place.

Lass over 5 years ago

Heya Betsy,

Welcome to the forum, though I'm sorry you find yourself here!

Now if you just look on the positive...... Pfffffft. Nah, wouldn't do that to you! Promise.

However, I will say that someone somewhere is talking a load of..... Pick your own word for insertion there. So firstly, thyroid cancer 100% cannot be diagnosed by ultrasound. Secondly, there is a rating system for thyroid lumps and they are graded after an ultrasound. It's a U1 - 5 I think it is, but don't quote me on that. If your nodule was totally not suspicious, they would have rated it low on the scale and so you'd never have had an FNA. It needs to be at least a U3, again don't quote me, before you are given an FNA. So somebody looked at your nodule and thought something looked out of place, and you and I are never going to look at a nodule on the screen and see the subtle differences that a trained radiographer will.

Then we get onto the FNA. It's not particularly accurate tbh, and lots of people end up with diagnostic hemi-thyroidectomies. Also, follicular thyroid cancer 100% cannot be diagnosed via FNA. The only way it can be diagnosed is through genetic testing of samples, which isn't readily available in the UK, and/or getting the whole lump under the microscope. Thyroid cancer is more about the quantities of a cell than the look of the cells. Because we have follicular thyroid cells normally. So again, with an FNA there's a scale and this one has results starting with a T. T1 is the sample is rubbish and we need to try again. T2 is everything is fine, it's just benign. T3 is we're not sure, but it might be cancer, maybe check again. T4 is we're pretty sure it's cancer, whip it out. T5 is it's almost definitely cancer, but we won't say it definitely is because remember Margaret last year who got this result and didn't have cancer. So we'll hedge our bets just in case. Whip it out.

So, in regards to your questions. How do they know they got it all? Honestly, they don't. Do you know if your cancer was in your nodule, or was it elsewhere in the half of the thyroid they removed? They are best guessing it based on your age, because thyroid cancer is supposed to affect older people more than younger. So finding cancer is unexpected and they are surmising that your other half is clear because of that. They won't have missed anything in the lump removed, because they find cancers less than a mm in size once the lobe is removed. So whatever was in that half has been found, and that half is out and gone, and they are pleased they got it all. Out of interest, why did they say they were removing half?

Your first question about the ultrasound I've explained above. Someone saw something concerning which is how you got the FNA. As for the gap between scans, actually it's the 3 month one that's unusual. Usual monitoring for people who keep half of their thyroid is roughly every 12 months. You'll see a thread from Oban here, who is going to get her first scan at some point. And she's roughly 18 months past her op date.

I'm not sure what steps you think you've skipped, but this is quite standard for thyroid cancer. Lots of people get the 'we aren't sure if it is cancer or not, so we'll take half out just to check', then once it's out you get the 'yup it's cancer, but it's all gone now and you're fine' speech. It's why I asked why they removed the half, because if everything was definitely benign, so a T2, then they'd not remove it unless it was giving you problems breathing, swallowing, or speaking.

As for people, they suck. Especially at your age! I found my lump aged 30, got my diagnosis aged 31. My peer group hadn't experienced anyone their age getting sick before, so had no idea what to say, or how to act, and usually got it wrong. Now, my situation is different to yours because mine had spread to my bones and I'm now out of work, unable to work, and classed as disabled. So my friends mostly just drifted off because I couldn't go out to things they invited me to.

Your mind has changed, your viewpoint has changed, but they are all still in that bubble of thinking they are invincible and have careers and families to build, always looking forward. But you've kind of been stopped in your tracks a bit, and are almost being forced to look around at the here and now and to re-evaluate where you are, who you are, and where you're going. It's a bit of a mind fuck, if I'm to be frank. But with time, you'll get your head around it all, and you'll be able to move on. But you'll not be moving on the same person you were, there will be subtle changes to you that will actually make you a better person I believe. It makes you more aware of what's going on around you, more aware of your self, more empathetic to others, and so on.

I'm not saying the diagnosis is a good thing, not at all. But it's nice if you can get something good out of it!

Plus, you've always got us to bitch and moan at as and when you please!

Lass

I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

FormerMember over 5 years ago in reply to Lass

Hey Lass,

Thanks for the response.

That makes more sense with what I've seen from people's posts here. I think it may be to do with seeing a locum consultant on my first few visits and when I first saw him he sent me for both an ultrasound and FNA so I think he was covering all bases as no scan result before they decided to biopsy. And I've gone back through the copy letters I have of what they sent my GP and although theres no ultrasound grading the biopsy has been classed as T2 and the main thyroid surgeons letter describes it as 'reassuringly benign'!!

I felt pressure from the lump and it was quite visible so it was my decision to take it out and I made them give me an appointment with the surgeon and I pushed him because yes although we thought it wasn't harmful I wasn't happy for it to stay and I was young enough to heal pretty quickly from surgery and I was happy with the standard risks and that I might have lifelong tablets. They only removed half as the lump was clearly only on the left half of the thyroid.

They referred to the lump on the thyroid being cancerous not the thyroid itself so I guess that's why they're not thinking it's anywhere else but I've got that on my list of questions for them specifically.

Maybe the 3 month scan then is because the biopsy didn't raise any red flags. Who knows. But that's quite reassuring that 12 months between isn't unusual.

Yeah I think that's what I'm having an issue with as at the follow up after the ultrasound & FNA done at the very first appointment, they said it categorically wasn't cancer and that was the first I heard that it even could be! So to go all the way from nope not cancer, just a random lump if it's bothering you we'll remove it, if not then just carry on. To me pushing to have it removed to then be told 4 weeks post op that actually we were completely wrong and you had a cancerous tumour in your neck for 18 months and we were happy to leave it there - is a bit of a shock!

Jeez, sorry to hear that Lass, that does suck! And yeah people do suck too. But I get what you mean, even though they know you they aren't in your shoes so can be far more detached about it.

'Its a bit of a mind fuck' you can say that again! It's probably the best way to describe it.

Thanks again,

B xx

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