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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 23, 2023
In reply to @molly0102 "Hi, IDK if you or any of the other commenters have received any clear answers to..." + (show)
@molly0102

Hi, IDK if you or any of the other commenters have received any clear answers to their concerns; but here is my experience. I had a complete thyroidectomy due to multiple cancerous tumors. A few years later I had symptoms of a reoccurrence. Doctor did not show much concern since all the typical thyroid levels post surgery and replacement hormones were normal. I sought a second opinion with “Dr. Google” 🙃. I found in rare cases a cancer reoccurrence can be missed if a Thyroid hormone ANTIBODY test is not also ordered. I demanded that blood test; and it was sky high. There is a special scan (I can’t recall what it is called - but it is definitely not a CT nor a sonogram, PET, nor MRI). The scan uses an iodine contrast to pick up thyroid cells, because that’s where microscopic cancer cells could have survived and regrow looking and behaving as a thyroid gland tissue would. My treatment was radiation. Since then I have not had another reoccurrence or regrowth. And now the antibody test is routine. I hope this helps give you some additional information to run by your doctors.

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Welcome, Molly. How was your recovery after radiation? What is your follow-up schedule, i.e., how ofter do you see your endocrine oncologist and what tests are done?

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1 reply
molly0102 | @molly0102 | Dec 21, 2023
In reply to @catmama "Hi Everyone, I’m new to this forum, as a matter of fact I’ve never actually posted..." + (show)
@catmama

Hi Everyone,

I’m new to this forum, as a matter of fact I’ve never actually posted on any forums before. I had total thyroidectomy October 25, 2022 and RAI and the Gamma scan December 2022. I had a nodule on the left side of my thyroid that turned out to be papillary cancer that was discovered by my PCP in late August and was fast-tracked to getting the surgery and treatment. Since then no one has followed up with me for any scans, only blood work (PCP handles). Am I supposed to have any kind of after care treatment like sonogram or PET scans? My PCP told me to call the oncologist, which I did, but they said they don’t do any of that follow up care…does anyone know who should be taking care of this for me? Or do I just need to be my own advocate and insist on having these tests? Thank you for any input or information!

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I have an endocrine oncology physician follow my post follicular carcinoma /thyroid cancer.

REPLY
molly0102 | @molly0102 | Dec 21, 2023

Hi, IDK if you or any of the other commenters have received any clear answers to their concerns; but here is my experience. I had a complete thyroidectomy due to multiple cancerous tumors. A few years later I had symptoms of a reoccurrence. Doctor did not show much concern since all the typical thyroid levels post surgery and replacement hormones were normal. I sought a second opinion with “Dr. Google” 🙃. I found in rare cases a cancer reoccurrence can be missed if a Thyroid hormone ANTIBODY test is not also ordered. I demanded that blood test; and it was sky high. There is a special scan (I can’t recall what it is called - but it is definitely not a CT nor a sonogram, PET, nor MRI). The scan uses an iodine contrast to pick up thyroid cells, because that’s where microscopic cancer cells could have survived and regrow looking and behaving as a thyroid gland tissue would. My treatment was radiation. Since then I have not had another reoccurrence or regrowth. And now the antibody test is routine. I hope this helps give you some additional information to run by your doctors.

REPLY
2 replies
mcmaya | @mcmaya | Nov 11, 2023

I had removal of my thyroid in 2018.
I’m checked every 6 months and last month they found a regrowth of papillary cancer in my thyroid bed.
It’s why it’s important to be checked every six months
M

REPLY
teanna | @teanna | Nov 10, 2023
In reply to @catmama "Hi Everyone, I’m new to this forum, as a matter of fact I’ve never actually posted..." + (show)
@catmama

Hi Everyone,

I’m new to this forum, as a matter of fact I’ve never actually posted on any forums before. I had total thyroidectomy October 25, 2022 and RAI and the Gamma scan December 2022. I had a nodule on the left side of my thyroid that turned out to be papillary cancer that was discovered by my PCP in late August and was fast-tracked to getting the surgery and treatment. Since then no one has followed up with me for any scans, only blood work (PCP handles). Am I supposed to have any kind of after care treatment like sonogram or PET scans? My PCP told me to call the oncologist, which I did, but they said they don’t do any of that follow up care…does anyone know who should be taking care of this for me? Or do I just need to be my own advocate and insist on having these tests? Thank you for any input or information!

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I have blood test,and ultra sounds every six month to a year that my endocrinologist orders, then I go over The results with him.

REPLY
koh | @koh | Nov 10, 2023
In reply to @catmama "Hi Everyone, I’m new to this forum, as a matter of fact I’ve never actually posted..." + (show)
@catmama

Hi Everyone,

I’m new to this forum, as a matter of fact I’ve never actually posted on any forums before. I had total thyroidectomy October 25, 2022 and RAI and the Gamma scan December 2022. I had a nodule on the left side of my thyroid that turned out to be papillary cancer that was discovered by my PCP in late August and was fast-tracked to getting the surgery and treatment. Since then no one has followed up with me for any scans, only blood work (PCP handles). Am I supposed to have any kind of after care treatment like sonogram or PET scans? My PCP told me to call the oncologist, which I did, but they said they don’t do any of that follow up care…does anyone know who should be taking care of this for me? Or do I just need to be my own advocate and insist on having these tests? Thank you for any input or information!

Jump to this post

I don’t know what is considered “ normal” for follow up because I am still having difficulty getting regulated on medication. I continue to have frequent bloodwork and ultrasounds, however I was told that once things get regulated I would go to having yearly ultrasounds along with blood work. I am having a lot of side effect issues and pain, so I haven’t moved on to typical monitoring.

REPLY
catmama | @catmama | Nov 9, 2023

Hi Everyone,

I’m new to this forum, as a matter of fact I’ve never actually posted on any forums before. I had total thyroidectomy October 25, 2022 and RAI and the Gamma scan December 2022. I had a nodule on the left side of my thyroid that turned out to be papillary cancer that was discovered by my PCP in late August and was fast-tracked to getting the surgery and treatment. Since then no one has followed up with me for any scans, only blood work (PCP handles). Am I supposed to have any kind of after care treatment like sonogram or PET scans? My PCP told me to call the oncologist, which I did, but they said they don’t do any of that follow up care…does anyone know who should be taking care of this for me? Or do I just need to be my own advocate and insist on having these tests? Thank you for any input or information!

REPLY
3 replies
jennyherndon | @jennyherndon | Nov 3, 2023

Thanks for checking in. I went back to the doctor on Tuesday and they are treating the high TSH with meds. I’ll receive ultrasound 3x a year to monitor the thyroid tissue that is still there ( or grew back).

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 3, 2023
In reply to @colorado73 "Thank you. Pretty nervous." + (show)
@colorado73

Thank you. Pretty nervous.

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@colorado73, how did the PET scan go?

@jennyherndon, have you met with your doctor in the meantime to learn what's next? How are you doing?

REPLY
colorado73 | @colorado73 | Oct 30, 2023
In reply to @jennyherndon "@colorado73 thank you. and good luck tomorrow with your PET scan." + (show)
@jennyherndon

@colorado73 thank you. and good luck tomorrow with your PET scan.

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Thank you. Pretty nervous.

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