ThyroSeq

FormerMember
FormerMember
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Hello

My husband has been given a 'indeterminate' result on his biopsy of a nodule on his thyroid and the consultant has suggested the best option is surgery.

We've been looking at Thyroseq which is a molecular test they do in the US only (I think) and wondered if anyone has had any experience of this? if we can avoid unnecessary surgery this seems like a sensible route?

Thankyou for any advice.

stella

  • Hi Stella 

    I haven't personally heard of that test. 

    Is the nodule only on the thyroid and no suspected lymphnode involvement? 

    Sometimes in that instance they may suggest a partial thyroidectomy. That would give conclusive diagnosis and if the nodule is encapsulated then there might not be a need for any additional treatment. A partial thyroidectomy would still enable the body to produce some thyroxine.

    If the nodule was more invasive they may then opt for completion to remove the remainder.

    Generally surgeons are very good at following contour/natural wrinkle lines in the neck and place scar in those so that after healing many are barely noticeable. The scar tends to be around 2inches. Recovery time from surgery is relatively short.

    In my case the FNA showed thyroid cells present in my neck lymphnodes so I had a TT and neck dissection and later RAI But that was 2017 and I'm now back to work and living life more or less the same as before. 

    Sorry I know that's not really what your asking.  But just wanted you to know the surgery isn't necessarily as major as you may initially think. And the outcomes can be really positive. 

    Maybe best to speak to the consultant again and weigh up all your options. I'm guessing that test may be expensive and if it is only USA, possibly difficult to get during Covid, possibly delaying treatment? Plus risk of catching covid during travelling. Its a lot to weigh up. 

    Hope maybe someone else may be able to offer more useful advice. 

    Good luck x

    Ciara 

  • They type of thyroid cancer that's most difficult to diagnose by needle aspiration is follicular thyroid cancer.  Traditionally these nodules can only be confirmed as cancerous by cutting them out and looking at the whole lump in cross section. 
    I did a quick search and found this report (below) and in the results, it doesn't look like it's successful enough at identifying that I (personally) would take a chance on it not being right.

     https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3816258/#:~:text=ThyroSeq%20DNA%20assay%20identified%20mutations,%25)%2C%20and%2011%20of%2015

    A diagnostic hemi-thyroidectomy really is the only way to be sure. My sister had an inconclusive FNA and it was clear on surgical analysis. She lives completely normally and doesn't even have to take thyroxine.

    I had one and I had cancer. Neither of us could have known without going through it.

    A diagnostic hemi is typically a short overnight stay in hospital.

    It's obviously up to your husband to decide, but if surgery tells you 100% yes or no, then many people would not want to settle for less.

    (Just my opinion of course).

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous

  • Hi Stella, I can see you posted this 3 years ago… I’m now in the same situation as your husband with 2 indeterminate nodules on either side. I was wondering if you could share if your husband did thCold sweatthyroseq test? Was it helpful? I’m looking at any possibility to avoid total thyroidectomy. My diagnosis is inconclusive with 75% it is not cancer but a benign nodule. But they have to put my thyroiCold sweatin tge bin to see it. I’m a relatively young female with 3 kids - can’t imagine cutting my organ out for nothing Cold sweatSobBroken heart it drives me insane. I would love to hear anything on thyroseq pls Pray tone1 I hope your husband is well HeartHeart

  • Hi Evgenia,
    The person who started this post does not appear to have ever come back and posted again, so it's probably not likely that you're going to get a response from her.

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous