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Medullary Thyroid Cancer Prognosis

Hi, thanks for your time and help. About 10-12 or so years ago, my father was diagnosed with medullary thyroid cancer when he was in his early 30s and had his thyroid removed. Over the next few years, he had 2 more surgeries removing lymph nodes (i cant remember what years exactly everything happened) in his neck.

He currently goes to Mayo clinic twice a year for examinations and has blood tested every 3 months. He hasn't had any more surgeries or further treatment for probably 7-10 years now. I overheard my parents say one the phone once that he still has calcitonin in his blood but its stable which I'm guessing means that some of the primary tumor is lodged in a well perfused tissue somewhere and the cancer could return at some point.

I've done a lot of reading on it, and I saw it is often related to MEN syndrome. I don't beleive he has either form, though I may be wrong or misinformed. I know my mother wanted my brother and I to be tested for the gene but his doctor said it wasn't likely genetic. His grandmother also had thyroid cancer, although I'm not sure what form.

Anyway, that all started happening when I was about in kindergarten or early grade school and I'm now in my twenties. I can hardly get my parents to talk about it and I think they just give me BS answers all the time, I was just wondering if I could get an honest assessment of what his prognosis might be, the significance of the calcitonin, and how likely it is the cancer would return as he ages; I know its probably the worst form of thyroid cancer to get. Thank you!
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97953 tn?1440865392
The key is following the calcitonin - if it increases (some research suggests that a 2x increase is a significant concern) then the tumor is likely on the rise.  It does not sound like he is in remission (persistent detectable calcitonin) however Mayo should be able to give more specific prognosis info as they have the details of his case.

If I were a child of such a patient, then I would at least measure a calcitonin, calcium level, and perhaps RET oncogene -- easy blood tests for important screening of this cancer (there are familial medullary cancer cases without MEN - this would be screened for by thyroid ultrasound and caclitonin -- the RET screens for a type of MEN syndrome).
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Avatar universal
Thanks for the reply. I know Mayo probably has more detailed info and would be more accurate, but my parents won't tell me anything about it... I was just wondering for my own information what the likelihood is that the cancer will return at some point.
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