FNA thyroid biopsy results

[Lizg1991]

Hi everyone, I had a FNA on 22/04/2024 and to date I’ve literally heard nothing gp referred me so I don’t have a consultant at the hospital, hospital keep saying go to gp gp keep saying nothing so I had a face to face appointment today and my Dr in fuming, I have a report there’s no clear information she said to me, she said that it’s like they are still not sure and there’s no actual answer but at the bottom it said patient to be discussed in MDT but she didn’t really elaborate to what this actually meant. She has sent an urgent letter to endocrinologist at the hospital to ask what is going on, which has still left me in limbo, and me being me I have googled the few words I heard of papillary and cystic changes and MDT meeting and they all point to there being cancer, not really sure why I am posting as I just feel in limbo and I feel a bit forgotten as my FNA got lost in translation and happened 8 weeks after my first scan despite the notes saying I had red flags and needed an urgent appointment I had to chase to get my biopsy now I feel like they’ve kinda forgotten me again and I’m having to chase to get any answers, does this mean I do have cancer? I just kind of want to know if I can draw a line under things or prepare myself for the next steps I just don’t know, sorry for the long message lol.

PALS is more than likely your best route.

After a referral is sent your GP honestly has no impact on what happens in the hospital.

There will be a consultant responsible for your care, PALS are ideally placed to track this person down and find out what is happening.

Thank you so much :) I will try and go through that route

I understand there are steps and policies that need to be followed I just feel so let down with this journey as it actually started in 2022 when pregnant with my youngest and again I got lost in the system after I gave birth and it just seems I’m always fighting to get myself seen and heard.

OP i feel for you i have just started my journey with a referral for two tumours in my neck and my referral for FNA is a good 16 weeks apparently. It’s been going on for ages now until they finally decided to give me an ultrasound to shut me up. The only thing I would hope would give you reassurance is that thyroid cancer is slow growing. My mum had it at 26 and around 40 and she’s completely fine and 67 now. It’s horrible knowing there is something going on but your being let down by the system

endocrinology doesn't deal with thyroid masses/lumps, it's thyroid surgeons that you need to be referred to
it's unlikely to be cancer

Thank you this sounds re assuring

Endocrinology does deal with all thyroid issues.
I have had thyroid cancer, it was a straight forward operation to remove the tumour and part of the thyroid.
I was 36 at the time, thankfully it hadn’t spread, I am now a fit and healthy 60.

Thank you for
your reply autumn1610 so sorry your going through a tough time too! Hopefully it is not something they are overly worried about and I get the nhs are under a lot of strain and I’m so grateful for them but things like this just frustrate, tbh I don’t think I’m so worried if it does turn out to be cancerous, as like you say it’s slow growing my mum had issues in her twenties with a goitre and nodules so I’m not as such worried because I know it’s treatable it just annoys me that no one seems to be able to communicate, and I also then worry about other like yourself as if it’s happened to me then it must be happening to others

Keep us posted autumn1610 and if you need a chat always here to listen!

an update I suppose this is part of the letter that has been sent to the endocrine team but I have absolutely no idea what it actually means 🤣, so I’m just hopefully someone will get back to me or the gp with some kind of information.

a further scan and FNA was organised. This was carried out on the 22nd April. We have not been sent the report of this but I can see the histology report on the hospital system. My understanding of this report is that it showed a follicular lesion and it was not clear whether this was a follicular neoplasm or a hyperplastic nodule. Discussion in an MDT was advised. I am not sure whether this MDT has taken place and what the outcome of this discussion was. I would be very grateful if you could cast any light on what has happened as soon as possible.

Basically the result was inconclusive or unclear and the hospital needs to sort it out by discussing at a meeting?

I think so 🤣, I’ve told myself I’m not googling either of the options as if they still don’t know there’s no point worrying over nothing. I just wish they would have the meeting decide what we are doing so I can just get it sorted and draw a line if you know what I mean

Had a call from PALS today followed by a call from an ENT MDT organiser or something I can’t remember to apologise for leaving me without answers apparently
my
gp should have referred me to a consultant at the time of the original scan in January. So he apologised profusely couldn’t tell me my results but told me I had to go to the gp as soon as I could to ask for a 2 week wait referral to ENT and that an ENT surgeon will be in touch with me most likely on Monday to get me an appointment with them to discuss my results and next steps. So deffo progress but still not sure what’s exactly going on.

So glad there is progress and PALS have been helpful.

Honestly if you haven't had a call by Wednesday, I'd ring PALS again.

Thanks Anna so glad I went down this route, they were so apologetic and explained how I have been missed and that it should be dealt with asap, hopefully once I get my appointment with the consultant and surgeon I can get things sorted eventually haha x

So update now I have an apppintment with ENT consultant on 28th June now I’ve had an urgent 2ww referral and it says is patient aware of suspicion of cancer they’ve ticked yes and yes to giving me a leaflet. No one has actually said those words to me however at least it’s getting sorted and hopefully will get some answers next week. X

FFS what a mess, am sorry you have had to go through this.

Fingers crossed for you on 28th.

Thanks Anna, I spoke to the pals guy who had to chase the doctors this morning as they had not sent the referral on Friday as they said they did and then I can see my referral and the computer log of suspected head and neck cancer (thyroid) urgent referral 2 week pathway, but not one person has actually said to me we have a suspicion this is what it is, the only actual factual report I have seen is from my first scan in April that said U3 nodule FNA to be arranged, then the report to say it was done and that’s it I literally have not been told anything else other than I should have been referred to ENT at the start on the 2 week pathway by the GP, obviously pals couldn’t really tell me anything he has just apologised again and again and tbh right now I don’t even think I’m worried about the appointment anymore I’m just more worried something else is going to happen or be forgotten, i am thinking of making a complaint to my GP as if you’re too busy to get the referral done till Tuesday that’s fine as it’s still within the 2 WW however please don’t tell me how sorry you feel for me how awful it must be to have been forgotten and then get up from your desk and say it will be done right now, my trust in my Gp atm is just an all time low.

Well last update till my appointments I think as I keep banging on but with a 10 year old and 1 year old I’m trying to just act like everything is all good 🤣, I’ve got an appointment with endocrine on Thursday morning at 8.15 now and then I have my appointment with ENT on Friday afternoon so hopefully this time next week I will know more of what’s actually going on I’ve had a 2 week pathway leaflet through the post and so now just going to enjoy the weekend and think about next Thursday next Thursday 🤣.

Well I’ve had my appointment it’s a U3 follicular lesion, I’ve been told there’s a 40% chance it will be follicular cancer, they suggested a hemithyroidectomy however I also have cystic nodules and a goitre and I’ve been suffering with hypothyroidism so we have agreed I’m going to have the full one as I’d need the rest out if it is cancer, had my
vocal chord check as well so now I’m just waiting for the call for my pre op but I should be thyroid free in the next 4 weeks and hopefully that’s the end apart from meds, or if not radio iodine then all done, there’s no spread to lymph nodes so it’s very contained.

Well done for persisting and getting the treatment you need.

Hopefully in a few weeks (apart from the meds) the saga will be over.

Thank you Anna to be honest the fatigue the goitre the over or under yes it’s meds forever however for me the things this will all solve whether it’s cancer
or not far out way just having a Hemi for me, it was just such a relief to finally get a plan going! Hopefully it’ll all just go smoothly as it can from here.