Hi
I feel a bit silly posting on here because I have not had any diagnosis of cancer up to yet.
I had a neck scan for a cyst at the back of my head and neck pain and do have a little trouble swallowing but nothing major. They found a thyroid nodule by incident.
it's 11mm x 12 mm
It's classed as a u3 apparently and is solid with more of a blood flow than they would like to see.
Anyway I was sent for a fna biopsy and my results are thy1 indertminate. I was sent then urgent to ent and yesterday I was told that they want to do another fna next week and then go back to ent the week after.Â
I asked if it comes back the same what next and he says surgery to remove half the lobe.
I don't really want surgery naturally and asked what percent turn out to be cancerous. He said 20% chance which is 80% chance of not.Â
My thyroid tsh test is normal.
Has anyone with a u3 nodule been in this boat and does anyone know if the nhs do the afirma test yet? Â I've had extensive surgery a few years ago for a cholesteatoma which had grown everywhere and although not cancer it had done a lot of damage.Â
Is it definitely true that with half the lobe you don't need any medication? My function test is fine atm.Â
Thanks to any replies and I realise I have not been diagnosed and 20% chance is low.
Good morning,
Firstly don't feel silly posting here, were all here to help :)
I can't really comment on your situation (u3) but I have had 1 of my lobes removed just over 4 weeks ago and I haven't had any problems. In fact after I got over the operation and caught up on my sleep I actually feel like I have more energy than I have had for a long time.
80% seems like quite a high chance that's it's benign. Maybe they'll just monitor you and repeat the FNA?
Sorry I couldn't be any more help, but I'm pretty new to this.
Chris
Hi Chris
thanks for replying and sorry to hear you had the op. Hope you are recovering well. Why did you have a lobe removed then?
I am getting another fna next week and then another week to go to consultant for the results. I don't mind the op as such (so lo g as it means no meds if it's benign but it seems a bit drastic for a maybe thing. Most u3 results are benign they say and I would have thought there was another type scan before doing surgery perhaps?
 I know it sounds selfish but it was a nodule found by accident. From what I can see my next biopsy needs to be a thy2 I think and then they will send me on my way but if another thy1 or thy3 I need this lobe removal.Â
What about the afirma test? Has anyone heard of it?
I had the FNA and mine came back as a 4, so they were suspicious and removed it. I got the diagnosis of PTC 2 weeks ago, so my next surgery is the 30th. I had the same concerns as the surgeon asked me whether I wanted my whole Thyroid out or just half. He said that cause it was a 4 ( Non diagnostic but suspicious ) he'd recommend half out. I'm pretty sure he said that even 1/8th of the Thyroid remaining can produce enough hormones without the need for medication.
I'll be starting my meds in a couple of weeks.
I've not heard about the afirma test sorry, but I can deffo tell you for me, the operation, recovery and pain were not as bad as I thought it was going to be. About a week or so after the op to remove the half I felt back to normal energy level wise. They've taken bloods and I haven't heard anything so think half is doing the job.
Hope this helps.
Heya,
Both U3 and Thy1 mean that they just can't tell unfortunately. The U classification is determined just by looking at it with an ultrasound, while Thy classification comes from what the cell testing tells them. Thy1 often comes back when the nodules are on the small side, and often just means that they didn't get enough cells to really be able to tell what's what. Did they do your FNA with ultrasound guidance or without?
If you have the surgery and are left with half, and the tests come back as all being well - then there is a chance that you won't need pills and your remaining half will pick up the slack. But no-one can give you a definite yes or no on that one as it is all down to your own body. Lots of people can get by without thyroxine, lots get by for years and then as they get older their thyroid isn't doing as well so need a boost, lots just need a little help, and lots need a little more help and a higher dose. I'm afraid there's no way to predict how yours will react. Have you an issue with taking pills at all?
In the end, the choice to have the surgery or not is still in your hands. The doctor can only recommend and advise. So it's up to you whether you have the half out or not - if the FNA is still indeterminate. They can still dothe 'watch and wait' thing, and just see how it goes. But personally, I'd want to know. But then I've always been nosy and curious. lol
As for Affirma, a couple of years ago there were no doctors in the UK who were trained to collect the cells as needed. And since then I've read some articles that say that it's not as reliable as they thought. So my guess would be that even if folks in the UK were now trained, it wouldn't be available on the NHS. But as I say, that's just a guess and a Google.
Lass
xx
I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.
Hi
I am in a similar position to you and have been reading these boards recently but hadnt yet posted as I also havent been told that I actually have cancer. I know the boards have been of great interest to me and everyone seems really supportive on here so here is my story.
In April this year I noticed a large lump on right side of neck, looked it up on google and realised it was a swelling on thyroid. Â Went to GP who insisted it was nothing to worry about but sent me for blood test and arranged an ultrasound. Bloods came back normal and ultrasound graded me US3 so I began to worry. Was sent for needle biopsy last week and got results yesterday which were THY3f confirming a follicular lesion. Therefore surgery to remove half of my thyroid is taking place next month so it can be tested. My consultant said I Â hopefully would not need medication with half removed but obviously if it comes back as cancer I will need an operation to remove other half of thyroid and then RAI.
I have not heard of afirma test at all.
I can totally understand how you feel and hope we are both in the lucky statistic.
Hi
Thanks for replying.Â
No, I don't have a problem with pills as such but if I can avoid by not having to naturally anyone would not want them. I have always been slim too, never have I been weighty so I do worry about weight gain.Â
I just would have thought there was another way other than the half thyroid out. I know when I had a solid cyst (Fibroademona) in my breast I had a core biopsy done. It was gold standard they said and it took a little longer for my results. I have read about them being used in situations like mine but don't know if I'd seem rude suggesting it if my next biopsy comes back thy1 or thy3 (hopefully thy2 of course). I would certainly welcome it as apposed to a half thyroid removal.Â
He didn't mention watch and wait, in fact my gp mentioned this had been looked at at a mdt meeting I think she said. I have had lots of unrelated problems head and neck too. I don't really understand why mdt was mentioned when my nodule is u3.Â
Unknown said:Hi
I am in a similar position to you and have been reading these boards recently but hadnt yet posted as I also havent been told that I actually have cancer. I know the boards have been of great interest to me and everyone seems really supportive on here so here is my story.
In April this year I noticed a large lump on right side of neck, looked it up on google and realised it was a swelling on thyroid. Â Went to GP who insisted it was nothing to worry about but sent me for blood test and arranged an ultrasound. Bloods came back normal and ultrasound graded me US3 so I began to worry. Was sent for needle biopsy last week and got results yesterday which were THY3f confirming a follicular lesion. Therefore surgery to remove half of my thyroid is taking place next month so it can be tested. My consultant said I Â hopefully would not need medication with half removed but obviously if it comes back as cancer I will need an operation to remove other half of thyroid and then RAI.
I have not heard of afirma test at all.
I can totally understand how you feel and hope we are both in the lucky statistic.
So you are similar to me. Mine could come back at the next biopsy as thy2 I hope and end of worrying. So it's very quick that they operate if it comes back thy3. I hope you go on ok and get a good result.Â
I'd ignore the u3, as once you've had the FNA then i believe the thy trumps the u.
As for the Multi Discipline Meeting, it's always good to ask folks their opinion on results. As both your results are essentially 'we're not sure', then they probably just mentioned it to see if anyone else at the meeting could interpret the results any better is all.
As for weight gain, that would only become a possibility if your thyroid didn't cope with just being half, and the pills didn't equalise it again.
As for a core biopsy, it's never rude to enquire about other treatments and tests. There's definitely no harm in asking if they think it would be of use. But the core biopsies can still come back as inconclusive as well. Putting you right back to the surgery, no surgery quandry.
But my fingers are crossed that this FNA gets enough cells for a decision one way or another!!Â
Lass
X
I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.
Hello All
I thought it might be useful to post this link to a response that Geri, our thyroid cancer nurse specialist posted a few weeks back in the 'Ask about thyroid cancer' section. It doesn't mention Thy1 - though I checked that online and it's just an indication that there wasn't enough sample to get a diagnostic result (which sounds to me like it should have a different name like Thy0 or ThyX because Thy1 sounds like it ought to be benign) but it does explain a bit more about Thy3f and states that you just can't pre-diagnose a follicular TC with any confidence - hence why the hemithyroidectomy is the standard treatment. In effect, without the whole lump, they just can't give the diagnosis.
I also had a look for more info on the Affirma testing, and once I'd got back onto my chair after falling off at the cost ($4800 ish) I found this report that suggests it's really not that accurate anyway. I'm not aware of anybody who has had that testing - and since the cost is probably more than you'd pay for a private hemithyroidectomy and most likely not covered by UK-based private healthcare insurance (since it's not widely practiced, if at all) and very unlikely to be available on the NHS, I'm not so surprised it hasn't been something we've seen here on the forum yet.
Sorry you've got to go through the discomfort of another FNA, but let's hope whichever way it goes, that you get a proper answer this time around.
Best wishes
Barbara
“Scars are tattoos with better stories.” – Anonymous
Hi, mine was US4 and Thy2 so my surgeon said he thought the hemithyroidectomy was the way to go based on the US4. If you read the Thyroid guidelines then it states that the decisions for hemithyroidectomy are based on both factors US and Thy results. The only true 100% definitive way to tell is to take the lump out and test it.
That said the hemi although not the best thing I've ever done is not as awful as I anticipated. I'm hoping and praying I don't have to have the Total as reading what some of these ladies and gents on here have had to go through is scarey stuff.Â
I gues in my humble opinion if they take the half with the lump you know then it's gone, not sitting there waiting to catch you out in the future.
I hope you get some piece of mind soon because waiting and wondering is by far the worst part.
Ax
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