Posted 3/15/2015 9:17 AM (GMT -6)
I would love to talk to others who have this, or have a family history. My mother passed away in 1993 and we knew then it was hereditary with dominant inheritance but she passed so fast this information about us kids getting tested was way on the back burner to her suffering. She had anaplastic (medullary) thyroid cancer and it was fast.
We remembered bits and pieces of what the docs told us then, but even the type of cancer she had got distorted (she had others related to same gene apparently). I tried to get records without success due to age they had been purged.
I am now waiting for my own tests but still trying to track hers down from back then. The labs that did the testing should have them if I can find them, and some university as well since we signed releases for research on blood and tissue.
Looking for others that are affected by this group of genes and how things affect you, how you cope. And more importantly how do I get my siblings take this seriously and get tested themselves!
I have had other thyroid issues such as very high antibodies. Last calcitonin was normal last Feb and waiting for other labs and FNA until after I get the gene tests back. Did I say I hate the long wait????