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Shall We Start With Intros?


Posted by Jo C. Burzycki Patient ExpertHealth Maven

I figured since there were no questions posted here yet that I would start with something that we can all relate to no matter the diagnosis.

What kind of cancer do you have and when were you diagnosed?

Anyone else with hereditary cancer?

My name is Jolene and I'm 33 years old. My oldest two children and I have a rare genetic disorder called MEN2a that causes medullary thyroid cancer and adrenal tumors to name two things.

The kids were diagnosed in November 2004 with the medullary cancer and thankfully we caught it in time to contain it to their thyroids. They are now cured of that and we just sit and wait to see if they get the adrenal tumors too.

I was diagnosed in October 2004 with medullary cancer, the adrenal tumors on both glands, AND hyperparathyroidism. Fun lemme tell ya! Even after several surgeries I am left with metastatic medullary thyroid cancer in my neck, jaw, armpits, and lungs at this point. I have a huge U-shaped scar on my neck and I'm missing both adrenal glands which limits my life so much I hate it.

Medullary thyroid cancer doesn't respond to radiation or chemo so those aren't options for me. All we can do is cut the tumors out when they get big enough until we can't cut anymore.

If you would like to read our story it is at http://mohmen2a.blogspot.com

It's nice to meet you and I will stop being long winded there so I don't take up the whole page! LOL

 
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