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Profile picture for weavepj @weavepj

Love your positive and focused mindset - makes a great deal of sense to be seeking versus avoiding. My MENS1 began with kidney stones and parathyroid removal (x3) the last one was taken from the neck area and placed in my left forearm - very cool huh? Kept an eye on the Ca levels and Pth levels and low and behold they found NETS not only parathyroid but pituitary then pancreas lesions.... removal of all the offending organs (pancreas, gall bladder and spleen) I and my pump/CGM system are rather care free. PET scan last month found a NET carcinoid so the beat goes on.

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Replies to "Love your positive and focused mindset - makes a great deal of sense to be seeking..."

Hello @weavepj and welcome to Connect. It sounds like you have had some unusual NET findings with numerous surgeries.

How long ago were these NETs discovered, and how are you feeling now?

Hi there! I have MEN1 too and the same tumors. You are not alone! Please reach out to me anytime. I am heading up a new neuroendocrine support group at The Seena Magowitz Foundation. Please google when you have time. My story is on their website.

My name is Theresa Valentic.