MEN 2A My story

I have Medullary Thyroid Cancer and have been battling it since 1996. This is my story:
I was diagnosed in 1996 of MEN 2A thru genetic testing at MSKCC in NYC. I learned I was the 3rd generation of this hereditary mutation. I had a TT and had 3 of 4 parathyroids removed at the this time emidiatly following my diagnosis. I also had a lymph node dissection, with a few coming back positive. I was 12 years old. Following my surgery my calcitonin began slowly rising. In 2008 thru a fine needle biopsy and numerous scans it w a s determined I had more lymph nodes in my neck with clarifications. We expected the high calcitonin was due to the disease in my lymph nodes. I underwent another neck desection removing 16 nodes with the majority testing positive. During the same operation we had decided that when my neck desection was finished they would perform a exploratory laparoscopic procedure to inspect my liver for disease. I was informed that they found a small calcification on my liver. After a few days in the hospital recovering I had a ct scan done post op which revealed a pheocromocytoma tumor which is a expected issue with MEN2A. So in the beginning of 2009 I was in for a laproscopic pheo removal of the left side. I had minor symptoms of the pheo, which'I'm grateful it was caught early due to extreme issues with other family members going through it. My calcitonin never came back down post op, they actually continued to rise. The consensus then was the high cancer markers (ie. Calcitonin and cea) were due to metastatic disease on my liver. This is where it starts to get hairy for me, liver metastasis have not been diagnosed in my family up until this point. I have about 5 tumors currently on the liver. So this brings me to my current situation. I have been told that surgery is pretty much out of the question due to the liver being to high risk for trying to cut the tumors out. I am out of the running for a liver transplant due to the fact that this will be a reoccurring disease(don't get me started on this thought process). So it leaves me with ablation, radio embolization, or Vandetnib which is a receptor blocker that was FDA approved for MTC last year. Vandetnib sounds great but what worries m e is the fact that once started I would need to remain on it until progression is noticed or the side effects become hazardous. I am in the process of re staging now with multiple scans and will be meeting a new oncologist in the next couple months. I am currently on Synthroid 200mg, Calcitrol 2x a day, and calcium 600mg 3x a day.

Here's a quick background on my family situation. My grandfather was the first diagnosed with the mutation on the RET Onco gene 634. It was spread to my mother, aunt, and two uncles. One uncle had metastatic disease which spread to his bones and lost his battle after endless chemo at the age 28. My aunt has lost her battle at age 51 and my mother lost her battle at the age of 53. So I have 1 remaining uncle with the disease who like me is still fighting the desease. I have two children both of who tested negative for the mutation, and my wife is currently pregnant.

If any one has any experience with Vandetnib or embolization for MTC I would love to here your story and thoughts on treatment options.

Thanks for reading my story,

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