After noticing a lump in my thyroid, I have had my biopsy and ultrasound and both has come back as inconclusive and the blood results were normal. In view of this, my specialist (after discussion with a Multi Disciplinary Team) has suggested removal of right portion of my thyroid.
I have been researching regd inconclusive results and came across the Afirma test provided by an American company called Veracyte. This test involves testing DNA of the cells taken during biopsy to determine malignancy. [Think I got this explanation right....as much as I understood]
Does anybody have any knowledge of this test? Is it available in the UK? If so is it available via NHS? Will be grateful for any insight into this new test.
You sound like me from 15 months ago! I emailed all the likely British institutes and discussed Affirma with my endocrinologist as well as email the makers of Affirma. Things may have changed since then but as of 15 months ago I was told that there was no-one in the UK who was trained in their method of cell collection and I would have to travel overseas to one of them to do it. I also seem to recall there was a couple of places in Europe and outside the USA?
I'm glad now that I didn't pursue this as a) it would have all been very costly and b) in the last year there have been some reports out that suggest that the Affirma test isn't as accurate as it claims. There are also plenty of examples on forums of people who had the test, were told one thing, only for it to be another.
So the long and short of it is that no, it isn't available on the NHS.
Have you had a FNA? I had 3 - all inconclusive. If you have just had one then you could request a second go in a few weeks time?
I really wanted to to try something else before a diagnostic hemithyroidectomy was done but after 3 FNA's they said 'no more'. In the end I went for the hemi, diagnosed with PTC and had a TT a few weeks later. I'm now doing really well.
All the very best,
How you feel about this may depend on how big your lump is. My FNA was inconclusive (VERY typical with follicular from what I've read) but my lump was such a bloody whopper that it was coming out regardless. If they'd found out subsequently that it wasn't cancer and was made of cream cheese, I wouldn't have cared - I just wanted rid of that monster that was pushing my windpipe out of line and was about the size of an orange.
If I'd had a little lump I might not have felt so gung ho.
“Scars are tattoos with better stories.” – Anonymous
Thank you so much for writing back. Happy to hear you are doing good, its always encouraging to hear such positive news. Am so depressed after reading all sad stories.
I have hit a blank wall regd Affirma too. To answer your question, I have had the FNA once, and the test result was thy3 (inconclusive) which is same as the ultrasound result u3 - inconclusive. I am going to go back for a consult this week, so will be discussing options including another FNA.
The reason I am so worried is there is no concrete symptoms to warrant a removal I feel. My lump hasnt grown significantly since I noticed it and my blood test is normal. I feel completely normal physically so I cant understand why they need to take out the thyroid. Anyway just waiting to see how things go at the consultation. And if there is not other way, I guess I will need to under a removal.
Thanks again for replying.
Thanks for sharing. My lump is about 2.6cm and hasnt grown as far I have noticed and there is no pain or obstruction so far. Will be going back for a consultation with the specialist this week so will be discussing all options.
Hoping for the best.
just reading your post here and replies.... takes me back to Sept 2012 when I saw my consultant after having an FNA come back as THY3.... He advised an op to remove the side with lump and I'm very glad it was removed as it turned out to be Hurthle Cells TC.... so two months later I had a TT and the rest is now history.
My consultant led me to a very good website to read up about thyroid and cancer. I am not very good at being able to share links but I will tell you what you need to google to get there.. It explains T3 etc very well.
it is ... endocrine surgeon.co.uk
It takes a little time to get your head round all but well worth the effort.
I hope there is stuff there that will help you as much as me.
I always felt absolutely fine - just a strange lump in my thyroid that wasn't affecting my swallowing or anything like that. My pre-op Thyroid Function tests came back with a low TSH and normal fT3 and 4 but i still felt fine.
I think another FNA is worth doing although it is not unusual to get a repeat inconclusive result. You could also watch and wait - most Thyroid Cancers are very slow growing and you have time to think further about things.
If you are worried about it, then you may choose a hemithyroidectomy - at least that way you will know once and for all and there's a good chance you *may* not need Thyroxine afterwards if you get to keep the other side of your thyroid.
My nodule was 2.6cm too.
All the best,
I had a 3cmx4cm nodule, fna came back as was told on 24th Feb likely to be cancer. Had op to remove nodule and right side thyroid on 16 April had to have 3 separate drains in over 4 weeks as I had a seroma. Was back at hospital last week for results but they are still not back. Has been a long 11 weeks waiting on results, not sure if good or bad they are not back yet. Anyone else waited this long?
It can take a pathologist hours to accurately look at a removed nodule and with regional variations I understand it can take a few weeks for the results to come back. In my case though, in Nottingham, I just waited a week after removal to being told it was Papilliary Thyroid Cancer.
Please do phone them and ask for an update. It's not fun sitting in limbo!
Hi. I just joined this forum (I am in the US) so I apologize for my late reply to your post. I never even knew what a thyroid nodule was until a few were "incidentally" found when I was sent for an ultrasound of my right neck--The ordering physician did not request that my thyroid even be scanned--only my right neck. This was due to a very shallow Melanoma that was excised on my right upper arm, along with a Sentinel Lymph Node close to my right neck. Both surgical excisions (the wide excision and the sentinel lymph node) were found to be free of Melanoma cancer cells and the ordering physician wanted, as a precaution, to do an ultrasound of my right neck and my right axiallary breast area. The right neck and right breast showed nothing problemstic or suspicious. But the radiologists decided to throw in scans of the left neck and the thyroid, and I was then told two nodules on the right thyroid merited FNA. I have never had any thyroid disease symptoms in my 58 years of life and my thyroid blood tests right before the FNA were all normal. I have no problems with swallowing and the endocrinologist I saw for the first time told me he would never have found the modules by manual exam. The two nodules on the right thyroid came back just fine. But right during the procedure the interventional radiologist announced that he was going to biopsy a left thyroid nodule and the report from the procedure said there were "atypical cells" and that they had decided to do a second pass to send for Afirma testing. They also put down in the report that went to Afirma a larger measurement of the left thyroid nodule that differed from the original ultrasound report. Now I have an Afirma report that says NEGATIVE for BRAF mutation, NEGATIVE for Medulliary Cancer but "Suspicious" on GEC (Gene Expression Classifier) with Afirma's assignment of a 40% chance of cancer. The endocrinologist that saw me before the Afirma Report and had said the chances of my having thyroid cancer were very low now says based on Afirma's report I should see a Thyroid surgeon. My oncologist says the Afirma Report is great news and I should just repeat the ultrasound in 5 months. I told them I was very confused by this Afirma stuff and asked them to confer with one another. Ha ha.Meanwhile I had the good fortune of sitting down with someone who has a PhD in biogenetics/mathematics and who works with companies who do stuff similar to Afirma/Veracyte. He read the 4-5 studies I sent him that report how a VERY large percentage of people (like 80%!) with my type of Afirma report who have their thyroid taken out end up finding out after surgery that their thyroid was BENIGN. He explained the math and likely algorithyms that Afirma engages in in its proprietary testing in a simple-to-understand-way. (My math "expertise" was arrested in 11th grade!) Basically he said that they compare my cells' gene expressions to populations of people's gene expressions who have malignancy and people whose gene expressions are benign and that I fall within a population that matches neither but instead of saying WE DO NOT KNOW, they instead label people like me "SUSPICIOUS" with a 40% chance of thyroid cancer. He said his own personal feeling was that most endocrinologists out there haven't a single clue what the math and science is behind the Afirma test and that if he were in my shoes, he would not rush into any surgery especially without any history of thyroid problems or any symptoms whatsoever. I am seeing an expert in this field in a few weeks.
Hi, I know this is several years on but I wondered how you are doing?
I am contemplating an Affirma test as have similar symptoms to yourself, left side swelling of thyroid, normal bloods, no symptlms thankfully.
The negative feedback on this forum re the test is putting me off as it is expensive and wouldn't want to pay only to find out its not accurate!
I hope you are doing well and appreciate any advice or comments you can give, thankyou.
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