Anyone else had thyroid tissue regrowth after a total thyroidectomy?

Hope all goes well tomorrow. I’m waiting to hear back today on my next steps.

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

Thank you. Pretty nervous.

@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?

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).

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!

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.

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.

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

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.