Surely Waiting this Long Can't Be Right???

[Sporf]

Quite a while ago now, I posted about finding a lump on my thyroid, as I was unsure what to expect in terms of how long I should be waiting for a suspicious lump to be evaluated (healthunlocked.com/thyroidu... ).

Since then, I had my FNS - my referral being treated as non-urgent by hospital admin, despite the doctor requesting the FNS to be performed within a week. When I chased it, the admin I spoke to claimed that the results of an FNS are instant and I’d be fine to have it done three days before I was due back in to see the consultant. This was the 9th of June, and surprise, surprise my results weren’t ready for my appointment – adding another two weeks to how long I had to wait for results…

… Which still weren’t ready, so I ended up waiting for another half hour or so whilst the junior doctor who was seeing me chased histology, who apparently THEN got the cells under a microscope and declared the cells to be Thy3f cells (although I misheard her and have spent all this time looking up 5-3-F cells, which obviously came back with no information for me to understand what this meant). The junior doctor discussed this with the consultant, who recommended removal of at least the left lobe of my thyroid.

My details were sent to the surgical team to discuss at their monthly team meeting – which I was told was in two weeks’ time from then. After a month of waiting, I chased up what the outcome of this was, only to be told that the meeting wasn’t for another few days, and that I should call back the next week – which I did, only to get an answering machine telling me that my consultant’s secretary was off that week (asking someone to call back when you know you’ll be off is just plain rotten, TBH), so it wasn’t until the first of the month that I was able to get confirmation that the surgical team had actually finally discussed my case, but they couldn’t tell me anything else.

The week after that, I received a letter saying I have an appointment with the surgical consultant in the middle of September - which I felt was unreasonably long to wait, but accepted it none the less.

This Friday, I came home to a letter saying that the pathology department had “re-evaluated” my biopsy sample and re-graded it from Thy3 to Thy4, but as I already have an appointment with a surgeon nothing else was being done. This is from having found the lump in November last year, and it’s grown A LOT since then (it’s now about 2cm deep & 4cm tall, but I can’t tell how wide it is because I can’t feel all the way to the edge of it, but I estimate about 2.5cm) – which is making eating, drinking, swallowing saliva and just turning my head uncomfortable (it does hurt, but I’ve more painful illnesses and rate it as discomfort more than anything), and causing me to choke a lot.

I’m feeling that this amount of errors being made can’t possibly be acceptable, and even more (from what I understand about Thy4 grade cells) that having to wait ten months to get a high cancer risk nodule evaluated to be finally removed can’t possibly be right (or safe).

Can anyone shed any light on whether waiting so is acceptable? I’m at the point where I’m thinking I need to complain to PALS, but feel I should see if this is how everyone gets treated.

I guess I also need to know if the time could have made things worse. The lump’s very stuck to the surrounding tissue, and I’m worried about the sheer amount of surrounding tissue that’s going to have to come out with it. Has anyone had a similarly anchored nodule, and if so did you have to have any of your trachea / oesophagus removed with it?

I’m now debating whether I should ask the surgeon to just remove the whole thyroid to avoid having to go through the same palaver again. Does anyone know if a surgeon will agree to this?

TL;DR (I know I ramble, I just feel details are important) question summary:

1) Should I still have a Thy4 thyroid nodule still in me after it was discovered in November?

2) Is this something I should be raising a grievance about?

3) Is the surrounding tissue from around a thyroid nodule commonly excised when a nodule is stuck to the rest of the neck structure?

4) Will a surgeon perform a complete thyroidectomy rather than a partial one if I ask for it?

Thanks for reading, I hope some of you can help shed some light for me here!

If anyone who’s had Thy4 cells feels they can help me understand what’s going on with mine right now, I’d also be totally grateful – the internet is *really* vague about the whole thing!

[Marz]

Hi Sporf ......I am so sorry you have had to wait for so long - it must be so worrying for you. I do feel it is all VERY unacceptable but am loathe to advise you to complain. I have read many times on this forum about people complaining through various channels and it takes for ever and in some cases with so little result.

Of course it may help you to start the process - empowering you if nothing else. However I would like to think of you conserving your energy and emotions for your operation.

Really hope things go well for you and that you will be able to keep us up to date. I live in Crete - since 2004 - so things are different here - so am not really up to speed with the UK.

[Sporf in reply to Marz]

Cheers Marz, it's not my first instinct to complain but at this point I feel like I've been let down something rotten on something that could be a major illness.

You're right about conserving energy, I feel like someone's stuck a straw in me and sucked out all my energy!!

[cjrsquared]

No it is not acceptable. You need to start a complaint with PALS, but don't expect it to be quick. The questions about partial or full TT, and the amount of surrounding tissue that needs to be removed are questions for the surgeon. You need to look at the British Thyroid Association thyroid cancer guidelines, which are national guidelines and structure your complaint on where they have failed to reach this standard. If you do this it makes it much harder for the clinicians to argue about ' differences in clinical judgement' which is largely subjective and open to interpretation, as their actions will be benchmarked against nationally agreed best practice which gives them less wriggle room.

I know this doesn't help you in the short term, but starting the process now may ensure that your future treatment reaches the expected standard. Reading the guidelines may also empower you to ask the right questions, it hard to know what you don't know. Goodluck

[joyce59 in reply to cjrsquared]

couldnt agree more PALS is your best starting point. back in may i had an appt i wasnt happy with. mine was dealt with fairly quickly but of course it depends on which hospital. this time i choose who i wanted to see rather then take pot luck. although iam not sure what to expect in the future but feel a lot happier that PALS were there to act as a go-between.

[Sporf in reply to joyce59]

I'll get on to PALS after I've tried negotiating an earlier appointment with the surgeon, in that case. The amount of nagging I'm having to do is obscene, and I HATE nagging!!!

[Sporf in reply to cjrsquared]

Thanks for the pointers! I think half the battle here is knowing what standards I should expect - I don't know anyone who's had a dodgy thyroid biopsy (I know lots of thyroid patients, but none of them had even had to have a biopsy done), so have no one to compare notes with.

[humanbean]

A couple of links for you :

cks.nice.org.uk/neck-lump#!...

onlinelibrary.wiley.com/doi...

[Sporf in reply to humanbean]

Cheer buddy! I need a coffee before I tackle the Wiley document, I think, it looks heavy reading!!