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Scared - Suspected NET on tail of the pancreas
Neuroendocrine Tumors (NETs) | Last Active: Mar 13, 2023 | Replies (47)Comment receiving replies
I don't know how to even get help.
My GI doctor sent me to a pancreas specialist for my pancreas mass and then he lied in my records. I tried another one who didn't acknowledge the mass, skipped it over entirely, and left oit my history from the evaluation, leaving me at risk.
Can I ask where the doctors are who take you seriously?
Do you have symptoms? Maybr that's why they want to remove it.
Replies to "I don't know how to even get help. My GI doctor sent me to a pancreas..."
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@magnolia12
Can I ask if you spoke with a NET Specialist? If not, I have been reading these forums for months to help me wife, and we have NET Specialist and a multi-disciplinary team that has cared for her for 9 months, managing the chemo therapy (pill version), a very effective chemo plan that has reduced the mass on the pancreas by 70%, and the liver which had too numerous lesions to count, to now around 20, which they are ready to go in for surgery on March 1st, and get as much as they can, and our prognosis is good being more of a maintenance keeping the slow growing NET at bay. So the most important bit of advice is to get a NET Specialist, and Mayo is one of the best, there must of been some miscommunication with your situtation. Good luck on your journey, let us all know if we can help? Here is a link online to find a NET Specialist if you need it: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/