OK so I have had a 3a classification FNA result. (more info here: rcpath.org/Resources/RCPath... ) This is an indeterminate result which says that there are some atypical cells but there are a range of reasons as to why this may be so. My Endo has suggested an elective hemithyroidectomy so they can have a proper look at my nodule. The thing is that around 85% of the time the result will be benign and 85% of patients would not have needed the operation!"
I have found online Veracytes Afirma Thyroid genetic expression test which is exactly for people in my situation: veracyte.com/afirma/
Basically they put your FNA through their gene expression machine and they can tell with about 96% confidence if the genetic markers for malignancy have been turned on or not.
I have emailed Veracyte and they do not currently have anyone trained to do this test in the UK. Does anyone know of anyone / company / clinic who can offer a similar genetic expression test in the UK?
If it means that I could avoid what may be unneccessary surgery then I think trying to get this test done is a no-brainer.
Thanks
Melissa
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wysewoman
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Have you investigated the other route of seeing if a sample can be sent from here to the USA for analysis?
Thank you for posting your question - I had managed to be entirely ignorant of this test until now! It sounds extremely promising. Indeed, I'd have thought that the cost savings from avoided operations would make it a "must have" test on financial grounds alone. That many patients would not need to undergo the operations and subsequent treatment, although even more important, would not appear so persuasive to accountants.
I have emailed Veracyte and they are looking to train up people who do FNA in the UK. I assume that once collected, the sample would be sent to their labs in America.
I mentioned this new test to the radiologist who did my FNA this past Friday. He seemed genuinely interested in it and also had not heard of it.
I think it's entirely possible it will come to these shores in the next year or two but sadly, that doesn't help me now
I'm hoping there's another lab out there in the UK or Europe who also do it but so far havent turned up any solid leads...
Two weeks ago I emailed about 8 of the UK's Thyroid / Radiologist and Endocrinologist societies/ organisations askign about their knowledge of the Veracyte Afirma test and whether there are any labs / trials utilising it in this country or Europe. So far only 1 has replied.
The British Thyroid Foundation replied with a brief message effectively saying thankyou for the email and for bringing the Veracyte Afirma process to their attention and that they will review it with their medical advsiors.
I am feeling pretty disappointed about both the lack of response and the apparent lack of awareness of this test within the UK.
I am back to see my endocrinologist tomorrow and I will find out the result of my last FNA. If it is again a Thy3a result I know she will suggest a hemithyroidectomy. I think it's verging on insane that that I could undergo surgery (which 80-85% of people will have a benign final result and thus it was unnecessary) when this Veracyte gene expression test looks like it can give a much better indicator of whether there is actually anything to worry about before cutting me open.
I am in the same position now with an indeterminate FSA result and have been given a choice about whether to go for a hemithyroidectomy or wait and see for 6 months. How are you now. Did you have the op and what was the final result when they examined the lump? I am intersted in the Veracyte Afirma Thyroid Analysis but have not had any luck finding a UK practitioner. I hope you're fine now.
A little late, but Veracyte is partnered with Genzyme which has a UK presence. Might be worth giving them a call or email concerning the Afirma Thyroid test:
hello , I know your post was 10 years ago! If you could please share any information: did you do any molecular testing anywhere in the Uk? How was your experience? Did you get the diagnosis? I’m 10 years on in the same position and it seems that this area is as undeveloped as 10 years ago 😭💔
hi there! I appreciate your question was posted 10 years ago, but I guess if you are as desperate as me, you would find anything just to get some information. I have 2 indeterminate nodules and doctors recommended total thyroidectomy 🤯🤯🤯🤯 85% chances there’s nothing wrong with me but I have to put my vital organ in tge bin!! Please could you share if you found any information on molecular testing Afirma in Uk? What did you do yourself in the end? How are you feeling? I hope all went well with you 🙏🏻
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Thyroid UK to the rescue
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