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Hi pokeymama,
It broke my heart to read what you're going through. It sounds as though Kaiser is doing all it can, but it *is* challenging to find specialists who know what they're talking about. After my Providence provider congratulated me for "having the best cancer that you can have, since it never metastasizes," then meeting someone who DID have metastatic NET, I switched my care to the UCSF NET Center.
UCSF is fine as far as procedures go, but I had a very discouraging visit with their GI NET NP last week who couldn't understand, or would not listen to my digestive symptoms, which as someone with SIBO, I'm sure you can relate to. I'm so tired of being talked down to by ignorant people, as I'm sure you are, too.
My heart goes out to you, and hope you find the care that you deserve. Please keep me posted.
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Pamela, have you had a gallium 68 scan yet? How were they able to locate your tumors? I’m pushing for an endoscopy with ultrasound because my docs think my primary might be ‘hiding’
Are you saying that your docs don’t think it will spread out of the stomach?
As for ignorant and condescending health experts I’ve had years of them! I was once told to go home to my husband and stop bothering him! I sent him my diagnosis a year later, lol. So frustrating