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Neuroendocrine Tumors (NETs) | Last Active: Jul 19 4:44pm | Replies (31)
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My goodness, I guess I can expect a long road. Before my enteroscopy, I did have the gallium PET scan which was negative, so we thought it was all good.
I've been having so many symptoms. Very high BP and HR. Crazy hormone levels. Then the last blood work was normal. 51HIAA levels alway high. The endocrinologist I have said it needs to come out. But I suspect I'm not a priority. I don't know.
I'm to expect a Si resection but other than that, im lost.
I guess I need to wait and see. I live in Ontario, Canada. Its been exactly 2 weeks since the referral went in. I have no idea how long it will take. They don't move fast around here
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After you have the resection I assume you will start monthly injections(?), ask your Dr. I truly believe if I had started the injections after the first surgery the Mets would’ve been caught earlier & not been as bad. You have to be your own advocate, so stay on the Drs & make sure you have scans & blood work every 3 months after the surgery. Have you had Chromagranin A bloodwork? In my case it’s been a pretty good indicator of reoccurrence. Keep us posted!