Residual thyroid

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RE: Residual thyroid

by Tammym on Tue Jan 07, 2014 08:08 PM

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I understand everything you are saying. My biggest challenge is finding an endocrinologist that knows how to treat me. I have to remind my endo that I had MTC. I am in search for a new endocrinologist. Its his last time telling me that it's been 20 years, so he's almost positive that it won't come back. I was always told by my surgeon from Savannah that if a nodule is found, have it removed. Survival rate for MTC patients are better when caught early .....MTC doesn't respond to chemo or radiation. I had 6 surgeries in 5 years starting back in 1990 ( I was 19 years old). I was also told to keep a check on my lungs and liver, but this endo won't work with me. If you know of an endocrinologist in the Atlanta area, I would appreciate a name. Thanks.

RE: Residual thyroid

by dinparadise on Tue Jan 07, 2014 08:38 PM

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No I had follicular.  But mine is a bit different from others.  I am resistant to iodine so two rounds of RAI proved to be worthless.  I have had all reoccurances via PET scans.

RE: Residual thyroid

by Tammym on Tue Jan 07, 2014 08:47 PM

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Thank you both for the information. I am going to see a surgeon on Jan 14th. I will start compiling my questions. Any additional insight is welcomed! Again, thank you both.

RE: Residual thyroid

by butterfly501 on Tue Jan 07, 2014 08:53 PM

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On Jan 07, 2014 8:08 PM Tammym wrote:

I understand everything you are saying. My biggest challenge is finding an endocrinologist that knows how to treat me. I have to remind my endo that I had MTC. I am in search for a new endocrinologist. Its his last time telling me that it's been 20 years, so he's almost positive that it won't come back. I was always told by my surgeon from Savannah that if a nodule is found, have it removed. Survival rate for MTC patients are better when caught early .....MTC doesn't respond to chemo or radiation. I had 6 surgeries in 5 years starting back in 1990 ( I was 19 years old). I was also told to keep a check on my lungs and liver, but this endo won't work with me. If you know of an endocrinologist in the Atlanta area, I would appreciate a name. Thanks.

Can you go to Emory?

RE: Residual thyroid

by Tammym on Tue Jan 07, 2014 09:06 PM

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Do you have a name of someone?

RE: Residual thyroid

by dinparadise on Tue Jan 07, 2014 09:08 PM

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Sorry Tammy...missed the MTC factor.  If I were you, I'd go to a specialty cancer center/hospital.  I found that not all endos are familiar with thyca let alone well versed in MTC.  If you don't know of these centers, I'd google them and call them.  I did see there's a Thyroid Specialty Center in Marietta GA.  I know nothing about it but it sounds like you need a REAL specialist. 

I went through 3 endos before I headed to Cleveland Clinic and found a really good endo who truly knew thyroid cancer. 

Good Luck to you!

RE: Residual thyroid

by Tammym on Tue Jan 07, 2014 09:08 PM

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My deductible will be higher, but if it means finding a knowledgable physician and surgeon, I am willing to pay...........

RE: Residual thyroid

by dinparadise on Tue Jan 07, 2014 09:09 PM

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Sorry Tammy...missed the MTC factor.  If I were you, I'd go to a specialty cancer center/hospital.  I found that not all endos are familiar with thyca let alone well versed in MTC.  If you don't know of these centers, I'd google them and call them.  I did see there's a Thyroid Specialty Center in Marietta GA.  I know nothing about it but it sounds like you need a REAL specialist. 

I went through 3 endos before I headed to Cleveland Clinic and found a really good endo who truly knew thyroid cancer. 

Good Luck to you!

RE: Residual thyroid

by butterfly501 on Tue Jan 07, 2014 09:23 PM

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No name, but they do have a cancer center and a  thyroid cancer team. 

Most places are pretty helpful and friendly so you should give the thyroid cancer clinic a call.

You can even request an appointment online:

https://winshipcancer.emory.edu/patient-care/WinshipContentP

Good luck!

RE: Residual thyroid

by Tammym on Tue Jan 07, 2014 09:31 PM

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Thanks!
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