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Anyone else had thyroid tissue regrowth after a total thyroidectomy?
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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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
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1 ReactionI have blood test,and ultra sounds every six month to a year that my endocrinologist orders, then I go over The results with him.
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.
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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1 ReactionThanks 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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1 Reaction@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?
Thank you. Pretty nervous.
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1 Reaction@colorado73 thank you. and good luck tomorrow with your PET scan.
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1 ReactionHope all goes well tomorrow. I’m waiting to hear back today on my next steps.
I'm so sorry you're facing this. I pray all goes well for you.
I have my PET scan this Tues to determine what the hell is growing in the thyroid bed! I had my thyroid removed in April & ultrasound shows something large in the same spot the cancer was . Ugh.
Prayers for you!