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freeangel (@freeangel)

I am not ok with this at all

Neuroendocrine Tumors (NETs) | Last Active: May 29, 2020 | Replies (19)

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@mgreene

Dear @freeangel, I read your post with a growing dread. I was first diagnosed with a rectal carcinoid during my first colonoscopy in 2000. It was removed during the colonoscopy. It was small and had not produced symptoms. My gastro, internist and oncologist all told me the problem was gone, don’t worry and a carcinoid isn’t really cancer anyway. After 5 years of worrying and being rebuffed, I followed my instincts and found a specialist — on my own — a plane ride away from my Texas home. He refuted everything my local doctors had told me. There are more chapters to my story, but my point is: Find an experienced specialist and see him/her asap. Almost 20 years later, those people exist all over the U.S. If you cannot quickly see the first specialist you call, hang up and call another. You have suffered too much emotionally, if not health-wise. The kind support people here can direct you to sites where specialists are listed. I have learned to research for myself by reading everything from newspaper articles to articles in medical journals — to understand what docs tell me, to ask questions, to challenge, if necessary. I know you can find someone who knows what tests to order and is familiar with paths forward, if a carcinoid diagnosis is, in fact, accurate. Use your understandable anger to help yourself get answers, to propel yourself forward toward the best help possible.

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Replies to "Dear @freeangel, I read your post with a growing dread. I was first diagnosed with a..."

I'm so sorry that you were met with such dismissive behavior! Thank you for the kind advice. I was already thinking about moving down toward Tampa, which isn't too far from Shands, which has a good reputation. Mayo is 7 hours away, and I feel your pain with the plane rides – my daughter has repeatedly had to go to JAX for her scoliosis management.
Thank you again!