Anyone had a recurrence?

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Anyone had a recurrence?

by KimmyAnn on Fri Aug 23, 2019 12:39 AM

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Had my first neck mapping since my thyroidectomy in February. No concerns, but I'm just curious if anyone here had recurrence and if so, how long after your first surgery? I hope everyone is well otherwise!

RE: Anyone had a recurrence?

by ToddlerFather on Fri Aug 23, 2019 01:48 AM

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On Aug 23, 2019 12:39 AM KimmyAnn wrote:

Had my first neck mapping since my thyroidectomy in February. No concerns, but I'm just curious if anyone here had recurrence and if so, how long after your first surgery? I hope everyone is well otherwise!

I had a full thyroidectomy in 2012, and only in 2017 the lung metastases were large enough to appear on CT. 

RE: Anyone had a recurrence?

by KimmyAnn on Wed Aug 28, 2019 01:56 AM

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On Aug 23, 2019 1:48 AM ToddlerFather wrote:

On Aug 23, 2019 12:39 AM KimmyAnn wrote:

Had my first neck mapping since my thyroidectomy in February. No concerns, but I'm just curious if anyone here had recurrence and if so, how long after your first surgery? I hope everyone is well otherwise!

I had a full thyroidectomy in 2012, and only in 2017 the lung metastases were large enough to appear on CT. 

Wow! Any other indication something was going on, like elevated TSH or thyroglobulins? I hope you're doing well now!

RE: Anyone had a recurrence?

by ToddlerFather on Thu Aug 29, 2019 01:12 AM

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On Aug 28, 2019 1:56 AM KimmyAnn wrote:

On Aug 23, 2019 1:48 AM ToddlerFather wrote:

On Aug 23, 2019 12:39 AM KimmyAnn wrote:

Had my first neck mapping since my thyroidectomy in February. No concerns, but I'm just curious if anyone here had recurrence and if so, how long after your first surgery? I hope everyone is well otherwise!

I had a full thyroidectomy in 2012, and only in 2017 the lung metastases were large enough to appear on CT. 

Wow! Any other indication something was going on, like elevated TSH or thyroglobulins? I hope you're doing well now!

Tg level has never went to zero and was raising at almost every measurement, so there was some indication indeed. 

TSH was suppresed by design; hormone intake is higher than I would need, in order to keep TSH undetectable and make my mets not too excited. 

Tg level has now decreased, likely due to LDN treatment I'm doing (Low Dose Naltrexone). So far the progression can be called a remission. 

Because it is asymptomatic, oncologist prefers not putting me on kinase inhibitors at this point. 

RE: Anyone had a recurrence?

by KimmyAnn on Fri Aug 30, 2019 12:26 AM

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Best of luck to you, I hope they get it resolved!

RE: Anyone had a recurrence?

by ToddlerFather on Sat Aug 31, 2019 08:32 PM

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On Aug 30, 2019 12:26 AM KimmyAnn wrote:

Best of luck to you, I hope they get it resolved!

Thanks. What the experience has shown is that knowing where your original tumor is stored and for how long is key if things go south. So besides doing ultrasounds and Tg measurements, having that knowledge enables a through genetic testing if you ever need one. 

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