1. < Thyroid Cancer

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.

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

amiramonet | @amiramonet | Jul 15, 2023
In reply to @heatherbezzz "I had a total thyroidectomy in 1997, mine grew back as well. I had biopsies of..." + (show)
@heatherbezzz

I had a total thyroidectomy in 1997, mine grew back as well. I had biopsies of the tissue and it came back as normal thyroid tissue. The new endocrinologist didn't believe I had a total thyroidectomy and asked me to get the records from the surgery. My thinking was yeah right, from over 20 years ago, it's lucky if you find records from 10. I'm supposed to have another ultrasound as well. Mine isn't growing normally, it's more in the left side and back behind my ear area, very strange.
I hope and pray all was well with your situation.

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I had a complete thyroidectomy in 2005 . Never was good at taking the replacements . I got an ultrasound after Covid pandemic. I have a whole thyroid ; it grew completely back . They pulled my records too . I thought I was the only one lizard like …

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2 replies
hello2 | @hello2 | Jun 4, 2023
In reply to @bevr "In 2000 I had a thyroid nodule that was growing pretty quickly. The endocrinologist said it..." + (show)
@bevr

In 2000 I had a thyroid nodule that was growing pretty quickly. The endocrinologist said it was "precancerous" and needed to come out. My entire thyroid was removed. The surgeon said "we got it all", but I was never told definitively whether it was cancer or not. Since then I've been taking synthroid or levoxyl. My T4/T3 seemed OK and I was feeling OK, but I wasn't being followed for any sort of cancer. Last October I noticed a growth in my neck in the thyroid bed. The results of an ultrasound looked pretty scary, but two biopsies didn't detect anything. After surgery in January, the 3.5 cm lump was found to be solid Hurthle Cell Cancer. IRT last week showed a very small invasion in the neck area, and I'll find out if any of it was killed by the radiation in two days. I'm hoping against hope that the radiation worked, because HCC is very stubborn.

In my opinion, when my "thyroid grew back", the lump should have been removed immediately. If my thyroid was completely removed 20 years ago, what else could it be but cancer? Even if non-malignant, you don't want extra tissue hanging around. Additionally, HCC is difficult to detect vis biopsy. Whatever it was, I would have chosen to remove it. As a good friend of mine always says, "why fool around?"

Thanks for listening and good luck everyone!

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By any chance were you taking unithroid? That's what I'm taking since I did have cancer. I had total removal as well. The funny thing is, I requested to have it removed. That's when they discovered the cancer.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 3, 2023
In reply to @raejones2022 "I had a partial thyroidectomy, specimen came back follicular carcinoma. Had a total done 3 weeks..." + (show)
@raejones2022

I had a partial thyroidectomy, specimen came back follicular carcinoma. Had a total done 3 weeks post partial. One year later, more thyroid tissue grew, then I had radiation. Gone for good. Now I just had GIST surgery at Moffitt, Tampa. Rare epithelial sarcoma. Have mutation EXON18 that is resistant to chemo. Only treatment: CT abdomen, chest xray and labs. every 12 weeks. Does this sound reasonable????

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Hi @raejones2022, you've dealt with a lot! Glad to hear the thyroid cancer is "gone for good".

Here is a discussion group where you can connect with other members who have GIST.
- Anyone have experience with gastrointestinal stromal tumor (GIST)? https://connect.mayoclinic.org/discussion/gist-cancer/

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raejones2022 | @raejones2022 | May 23, 2023

I had a partial thyroidectomy, specimen came back follicular carcinoma. Had a total done 3 weeks post partial. One year later, more thyroid tissue grew, then I had radiation. Gone for good. Now I just had GIST surgery at Moffitt, Tampa. Rare epithelial sarcoma. Have mutation EXON18 that is resistant to chemo. Only treatment: CT abdomen, chest xray and labs. every 12 weeks. Does this sound reasonable????

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1 reply
bevr | @bevr | Apr 30, 2023
In reply to @colleenyoung "Hi @bevr, you may also be interested in joining this discussion: - Anyone here with Hurthle..." + (show)
@colleenyoung

Hi @bevr, you may also be interested in joining this discussion:
- Anyone here with Hurthle Cell (Oncocytic) Carcinoma? https://connect.mayoclinic.org/discussion/anyone-here-with-hurthle-cell-carcinoma/

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Yes! Thank you, Colleen.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 30, 2023
In reply to @bevr "In 2000 I had a thyroid nodule that was growing pretty quickly. The endocrinologist said it..." + (show)
@bevr

In 2000 I had a thyroid nodule that was growing pretty quickly. The endocrinologist said it was "precancerous" and needed to come out. My entire thyroid was removed. The surgeon said "we got it all", but I was never told definitively whether it was cancer or not. Since then I've been taking synthroid or levoxyl. My T4/T3 seemed OK and I was feeling OK, but I wasn't being followed for any sort of cancer. Last October I noticed a growth in my neck in the thyroid bed. The results of an ultrasound looked pretty scary, but two biopsies didn't detect anything. After surgery in January, the 3.5 cm lump was found to be solid Hurthle Cell Cancer. IRT last week showed a very small invasion in the neck area, and I'll find out if any of it was killed by the radiation in two days. I'm hoping against hope that the radiation worked, because HCC is very stubborn.

In my opinion, when my "thyroid grew back", the lump should have been removed immediately. If my thyroid was completely removed 20 years ago, what else could it be but cancer? Even if non-malignant, you don't want extra tissue hanging around. Additionally, HCC is difficult to detect vis biopsy. Whatever it was, I would have chosen to remove it. As a good friend of mine always says, "why fool around?"

Thanks for listening and good luck everyone!

Jump to this post

Hi @bevr, you may also be interested in joining this discussion:
- Anyone here with Hurthle Cell (Oncocytic) Carcinoma? https://connect.mayoclinic.org/discussion/anyone-here-with-hurthle-cell-carcinoma/

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1 reply
bevr | @bevr | Apr 17, 2023

In 2000 I had a thyroid nodule that was growing pretty quickly. The endocrinologist said it was "precancerous" and needed to come out. My entire thyroid was removed. The surgeon said "we got it all", but I was never told definitively whether it was cancer or not. Since then I've been taking synthroid or levoxyl. My T4/T3 seemed OK and I was feeling OK, but I wasn't being followed for any sort of cancer. Last October I noticed a growth in my neck in the thyroid bed. The results of an ultrasound looked pretty scary, but two biopsies didn't detect anything. After surgery in January, the 3.5 cm lump was found to be solid Hurthle Cell Cancer. IRT last week showed a very small invasion in the neck area, and I'll find out if any of it was killed by the radiation in two days. I'm hoping against hope that the radiation worked, because HCC is very stubborn.

In my opinion, when my "thyroid grew back", the lump should have been removed immediately. If my thyroid was completely removed 20 years ago, what else could it be but cancer? Even if non-malignant, you don't want extra tissue hanging around. Additionally, HCC is difficult to detect vis biopsy. Whatever it was, I would have chosen to remove it. As a good friend of mine always says, "why fool around?"

Thanks for listening and good luck everyone!

REPLY
3 replies
avawein | @avawein | Apr 17, 2023
In reply to @snowkitten "I had partial removed in May 1988 never took medication. Than in May 2006 they found..." + (show)
@snowkitten

I had partial removed in May 1988 never took medication. Than in May 2006 they found another lump on my thyroid went in to remove the rest of the gland and discovered the other half was growing back. Doc said meds suppress gland growth and that it is one of many that grows back. Also each surgery involved taking gland out to test for cancer (found none). Fyi 50 % of autopsies show non cancerous lumps on thyroid glands of all ages. Can you say pharma scam🤪

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Thank you for your response. That’s so interesting that your Doc said meds suppress gland growth. That kind of makes sense in my case.

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snowkitten | @snowkitten | Apr 16, 2023

I had partial removed in May 1988 never took medication. Than in May 2006 they found another lump on my thyroid went in to remove the rest of the gland and discovered the other half was growing back. Doc said meds suppress gland growth and that it is one of many that grows back. Also each surgery involved taking gland out to test for cancer (found none). Fyi 50 % of autopsies show non cancerous lumps on thyroid glands of all ages. Can you say pharma scam🤪

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1 reply
heatherbezzz | @heatherbezzz | Feb 13, 2023
In reply to @colleenyoung "Welcome, @heatherbezzz. Did you have another ultrasound in the meantime? Any updates on the regrowth of..." + (show)
@colleenyoung

Welcome, @heatherbezzz. Did you have another ultrasound in the meantime? Any updates on the regrowth of thyroid tissue and what steps are next?

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I have had another sono, it showed negative for anything. With thyroid tissues except residual.
However I am now having scans of my entire spine, marrow, everything with and without contrast. Pet didn't show anything on the spine but still looking for what is causing the rest.
Bone tissue has many lesions. I pray you all have great results. I'm sure mine will be ok.
Im not sure I'll be back soon to respond.

God bless all of you and the doctors hands you are in.

Heather

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