Anyone else had thyroid tissue regrowth after a total thyroidectomy?

Posted by avawein @avawein, Sep 12, 2021

Hi All. In 2004 I had a total thyroidectomy for nodules that were suddenly growing quite rapidly (non-cancerous). Two years ago I was diagnosed with a neuroendocrine tumor in my terminal ileum which was surgically removed. In the last month, they found two stable tumors in my liver but the CT scan and subsequent PET scan also showed what appears to be thyroid tissue (3+ cm long) in the left thyroid bed. My doctors showed skepticism that I had a total thyroidectomy but I have records to prove it. Has anyone else had thyroid tissue regrowth after a total thyroidectomy? I have a biopsy scheduled in two days. Thanks.

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littlelion | @littlelion | Sep 28, 2023

In reply to @colleenyoung "Any update after your consult, @littlelion? How are you doing?" + (show)

Hi! They can’t guarantee it isn’t thyroid cancer without removal of the masses but he said he isn’t wanting to rush removal due to where it’s growing they could cut my vocal cord and leave me on calcium tablets for life and if they remove it and it isn’t he would’ve caused those issues for no reason. I’m going for some form of scan again in a couple of weeks (he said technical but I have no idea what that means but he gave me a number to ring if I had questions so I’ll ring and check on that) and then they’ll do another ultrasound in a few months and if it’s still growing bigger then he said they will remove it then. Not really sure how to feel.

Colleen Young, Connect Director | @colleenyoung | Sep 28, 2023

In reply to @littlelion "Sorry to hear that, how are you feeling now? I’ve been scanned a couple of times..." + (show)

Any update after your consult, @littlelion? How are you doing?

littlelion | @littlelion | Sep 22, 2023

In reply to @colorado73 "I'm sure sorry you're going through this. I had my thyroid removed in April due to..." + (show)

Sorry to hear that, how are you feeling now? I’ve been scanned a couple of times via ultrasound the past few months as well as having a biopsy of the area done. I’m classing my appointment on Tuesday with the surgeon as a second opinion as this is a new dr at another hospital, my current consultant has asked him to review my case. Thank you for the well wishes. Fingers crossed for a positive outcome

colorado73 | @colorado73 | Sep 21, 2023

I'm sure sorry you're going through this. I had my thyroid removed in April due to a cancerous nodule & having thyroid cancer running in my genes & family history. I would be very vigilant about getting ultrasounds on that area to keep watch. But if not sure I'd get a second opinion.
Best of luck to you.

littlelion | @littlelion | Sep 20, 2023

In reply to @medicalinterest "I had a similar experience with Hurthle cell tumors and thyroid surgically removed 20 + years..." + (show)

Glad to hear you've had no further problems since the 2nd surgery. I have an appointment next Tuesday with an endocrine surgeon so will find out more about what's happening then.

medicalinterest | @medicalinterest | Sep 18, 2023

In reply to @bevr "I shared this in a previous post, but briefly, I had a similar situation where 20..." + (show)

I had a similar experience with Hurthle cell tumors and thyroid surgically removed 20 + years ago and later tumors regrew. Surgically removed again about 10 years ago and so far no problem. Hurthle cell tumors seem to be a especially bad type of thyroid cancer.

littlelion | @littlelion | Sep 17, 2023

In reply to @koh "Maybe you can ask if it would possible to have radiofrequecby ablation? …. Anything that shrinks..." + (show)

Thank you. One minute I’m told they can’t leave it in, the next minute they’re saying they might monitor it rather than removing it because of it being awkward surgery. I will see someone new who I’ve been referred to from my ENT consultant who’s an Endocrine surgeon so I will definitely ask if it’s possible to do that. I really really don’t want to have to go through surgery/removal of something else again so would really prefer something like that. Thank you ☺️

koh | @koh | Sep 17, 2023

In reply to @littlelion "Thank you for your response. I’m not sure what to push for now as they’ve said..." + (show)

Maybe you can ask if it would possible to have radiofrequecby ablation? …. Anything that shrinks a benign growth sounds like a less invasive way to deal with things. I’m not a fan of surgery and removal unless I absolutely MUST have something removed. Good luck!

bevr | @bevr | Sep 16, 2023

In reply to @littlelion "Very! My heads all over, it’s been very fast paced with all the scans etc over..." + (show)

I had IRT after the surgery, though Hurthle Cell is not very receptive to that. Then thyroglobulin blood test and ultrasound every 3 months for the first year. So far, all is good.

littlelion | @littlelion | Sep 16, 2023

In reply to @bevr "So confusing and scary! I only have my own experience to share. Hopefully someone else has..." + (show)

Very! My heads all over, it’s been very fast paced with all the scans etc over the past few weeks after having to wait from December last year till June this year to be initially seen. I guess I will be getting a second opinion soon as the surgeon I am seeing is at another hospital and has been asked to review my case.

Hope you are all ok now? Thanks again for sharing your experience