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Replies to "Hello @jhhaas, I appreciate you adding your experience to this conversation started by @lrittmiller. So many..."
Neuroendocrine Tumors (NETs) | Last Active: Jul 20 1:51pm | Replies (11)
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Hello @jhhaas,
I appreciate you adding your experience to this conversation started by @lrittmiller. So many people diagnosed with carcinoids (in various locations) were diagnosed incidentally as you were. My experience was similar. It is always good to find these rare cancers earlier rather than later.
I'm glad to hear that you are feeling good since your surgery. Have you had any treatments other than surgery?
Replies to "Hello @jhhaas, I appreciate you adding your experience to this conversation started by @lrittmiller. So many..."
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No - I went to MSK and they said it was not needed at this point. Will get scanned every 6 mos. It’s just frustrating that other doctors really don’t know much about it. So, for example, my pcp, and even the local pulmonologist, don’t think to relate symptoms to that (DIPNECH). But I think I will head to a net specialist for a 2nd opinion. I have only seen the surgeon at MSK (whom I adore) - and he likely reviewed it with a tumor board, but I figure I’d rather be safe than sorry