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.
Hope it goes well tomorrow, let us know how you get on please.
All the best
Chris
Hi,Â
Sorry to be back here posting but I am trying to forget until my next scan but now wondering if I did the correct thing by not having the surgery. You see I found a case study that was done at Birmingham I think and it mentions u3 nodules with thy1 results. I had two thy1 results and refused surgery to diagnose as I was told 20% risk which is low but looking what it says here it's more like 40%. Â
Can any of you with more knowledge interpret this for me as I'm reading now my risk is near on 40% which certainly would have changed my mind. I understand from reading on here us score means nothing so I'm confused???
Methods: Retrospective data was collected over a 24-month period between 01/09/14 – 30/08/16 from a tertiary UK centre. All Thyroid ultrasound scans (USS) accompanied by an USS guided diagnostic fine needle aspiration for cytology (FNAC) performed through this date range were initially included. U classification was compared against cytology reports according to the Thy classification and histology results for those cases that later underwent thyroid surgery.
Results: A total of 352 cases were included in this study. 141 (40%) USS guided aspirations in total were nondiagnostic [Thy 1]. A total of 133 [38%] cases underwent thyroid surgery confirming histology. 33 USS reports were deemed benign (U2), 2 (6%) later proving to be malignant on histology. 235 USS were reported as indeterminate (U3), 34 of 84 (40%) histology confirmed cases were malignant. 29 of 42 (69%) suspiciously reported nodules on USS (U4/U5) confirmed malignant histology.
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I have to correct that. Nobody should have said that the US score means nothing. What I believe we've said is that the US score determines whether you qualify for the FNA. And once you get to FNA, that ranking is more important than whatever was seen on the US.
The problem is that in your case, the FNAs have not been diagnostic.
20% or 40% - I think you need to take that up with the doctors or speak to our thyroid cancer nurse specialist . Most of us here in the forum cannot be experts about ultrasound. Some of us never even HAD ultrasounds (I didn't - my lump was so enormous we went straight to FNA).
We also really can't tell you what you should have done about surgery. That's between you and your surgeon. Show him/her that report and ask for comments.
Best wishes
Barbara
“Scars are tattoos with better stories.” – Anonymous
Thanks so much for your reply barbara. I was hoping you did tbh.
 I read this some time ago but tried to put it out of my mind and as regards my consultant.....I have only seen him twice and one was a wasted appointment. I will show it to him when I see him again but I'm waiting til March now for my next ultrasound and then I assume weeks to see him. I may even be discharged then. If it was only 20% risk I could live comfortable with that but with mentioning 40% it would have changed things. I can't even make the figures add up though for that study?? Maybe it really doesn't mean what I'm interpreting it as.Â
Sorry again to have posted. I do get in with things as best I can but naturally it's a tad worrying. If I got to see my consultant again I think I'd feel better. Maybe I should ask for an appointment maybe. I just hope he's not dismissed me because of the refusing surgery that he recommended. No one wants surgery naturally but as he wasn't persistent I thought it must be ok and perhaps he himself is one that doesn't think all nodules need them although guidelines say they do. Things are changing all the time.
Thanks again barbara.
Don't apologise - you can come any time you want to or need to.
Scientific papers are confusing. Often the raw stats don't tell the whole story so we need to be really careful about how we interpret them. Personally 1 in 5 versus 2 in 5 still feels like a significant risk to me but we each deal with risk differently. And as you know, sometimes the favourite wins the Grand National and sometimes it falls over at the first fence. Statistics are only betting 'odds' - they are not gospel.
Ultimately a lot comes down to how much risk you can personally live with and how much the not knowing is stressing you out. The only way you'll know for sure is to get it out and get it into the lab. But you don't HAVE to do that if you can get back to a 'normal' life and not let the not knowing drag you down.
Best wishes
Barbara
“Scars are tattoos with better stories.” – Anonymous
Hi thyroidnodulehelp,Â
I'm sorry to hear you are still going through the mill regarding diagnosis.Â
I had my appointment with the consultant (I was so ill with a rotten virus that day) and they said that although they can never be 100% certain that any nodule won't turn cancerous in the future, he advised me not to have mine removed. Â They are doing one more biopsy next summer and if that looks Ok then they will discharge me unless it grows again (apparently it grew from 1.3cm to 1.9cm).Probably about 1.6cm at present.
They also did thyroid and antibodies tests but I havent heard anything bsck,so I sm presuming all ok, even though my hands feet and nose (lol) are always freezing  The eye clinic at my local hospital have said I need to see an Immunologist (spelling) as I suffer terribly with allergies and eye problems (keratoconus, keratitis, fuchs syndrome and blepharitis) spelling probably wrong on most of those!
I hope you get some definitive answers at your next appointment.
Good luck
Hi jessy
Thanks for updating. So you need an immunologist. Have they said why? Is your eye problem related, hormonal? I saw one cos I got ramsay hunt on both sides.....different times tho (one side definitely, the other was never diagnosed at the time).
I also had the thyroid blood tests and more different ones. Everything ok I think. Not heard anymore.
My functional antibodies (whatever that is) were low and I had bloods sent off to another hospital for a second opinion on something. In fact they wanted me seen there for the tests. Something to do with lymphocytes...white cells etc. In fact I started off at the normal hospital and ended up with my appointments in the cancer centre for some reason. They gave me the pneumonia jab.
As you were advised not to have your thyroid out I assume your nodule is looking ok although it's grown. It's confusing isn't it. I was advised to have mine out though. In fact my doctor says better to overdiagnose than to under diagnose. I think I've missed the chance now tbh. I think my consultant has give up on me going against his advice. I was depressed (still am) and have been through enough scares to last me a lifetime. I may ask if it's still an option though early next year. I'm getting another scan and my last one was the same so I don't understand why he was so adamant at surgery earlier on but now after my giving him an argument he's given up. I just needed him to be more persuasive I guess if you know what I mean. Nothing has changed.
In fact we haven't even seen him since June. My results were given over the phone (I did ask) and I got a letter with my results being it's stayed the same. I don't want to be discharged though. Not now I know. I hope they keep an eye on it. How will you feel being discharged? I thought they would do 6 monthly or yearly scans at least. From what I can gather it's very slow growing anyway so because mine hasn't grown between 3 months does that mean scare over? When they were so convinced I needed the surgery.
I think sometimes they just want you off the waiting list but I admit I'm scared a bit but I put on a brave face most of the time.
I hope your next scan can bring closure for you jessy. And perhaps I may get to actually see my consultant if he discharges me before he does. I have questions and my doctor can't answer them as they aren't professional in thyroids. In the meantime we just need to plod on.
Take care jessy and thanks for coming back to update.
I have no idea why they suggested the immunologist. Probably because I get frequent infections and I have been put on antibiotics for my eyes now because they are just so swollen and sore. Also have tons of allergies and just feel ill constantly because of this. The cold nose (it is quite big lol) that hurts when the temperature drops is a new development (these past few months)Â Â even just a little and hands and feet etc even when I'm in the house with the heating on.Â
As for the nodule... I was quite poorly but didn't want to postpone my appointment so probably didn't push enough my case to have it out. They said they think the chances of it turning sinister now are very small but can't rule it out 100%. So that's why they said biopsy next summer (even though the radiologist said another biopsy in 3 months if it grew back)Â and then unless it grows or gives me any problems I can be discharged back to GP. To be honest I just don't think about it very much now. I think I would have to be pretty unlucky for it to turn nasty now.Â
I think yours was classed as more worrisome than mine.  I think I would have opted to have it out personally. Maybe they are becoming less concerned about it being cancerous as time goes on or maybe your consultant is a little narked that you have gone against his recommendations although I doubt that would be the case. If you have changed your mind I'm sure they will acknowledge that if you ask for another appointment.Â
Good look and keep in touch
Take care x
Hi Thyroidnodulehelp
I'm new here ,but wonder if my experience may be of help to you. Â My thyroid showed 'hot' as an incidental on a PET scan for another problem. Â I was recommended to have an FNA with ultrasound, which came back as a 3, I.e. Inconclusive. Â I was given the choice of having half my thyroid removed or monitoring the situation with FNA and ultrasound every 3 months. Â I went for the monitoring option and had 2 more FNAs, all 3's. Â When I went for my 3rd one, the consultant pushed me toward having an op although results were no different, he said his 'nose was twitching a bit'! Â So I had the op. And I can't say it was altogether reluctantly as although I had thought I would be fine with just monitoring, I did find that every time I felt unwell, or had a pain in my neck etc. etc, it did worry me a bit. Â The op was fine - no pain after, or very little, only in hospital for 1 night, and scar healed quickly. Â The results showed 2 tiny cancer of 3mm, and the nodule that the consultant was worried about was benign. Â So the results went to committee and they decided I don't need other side removed, but an ultrasound to check it in 6 months. Â So in hindsight, I possibly didn't need the op as the cancers were so small, and as I'm 68 probably would never have been a problem in the rest of my life, but knowing I did have cancer I feel happier it's been removed. Â At the moment I don't need any further treatment. Â My TSH levels have just been checked and are 6. Â I do feel very tired though still (7 weeks since my op) but perhaps it just takes time.
Just posting all this in case it's of help to anyone who is 'sitting on the fence' like I did.
Hi,Â
Thanks for both replies.Â
Jessy, I too try not to think but do pop back occasionaly. Thanks for your input.Â
And country lady, I'm glad you are slowly recovering and your cancers were minute so best you had it done really. I just wish my biopsies were more conclusive and then I'd know. It's such a shame they have to actually remove a side just to tell.Â
I would feel better if I spoke to my consultant I think. It won't be until the new year, maybe March even but I've waited this long so I can cope a but longer.Â
Take care both
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