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Seek help from a Carcinoid Specialist. It is now referred to as NETS (Neuroendocrine Cancer) Call the Carcinoid Foundation for help finding one closest to you. There are not many Specialists-but you will benefit by traveling to see one. A new drug has recently (end of January 2018)been approved. Don't delay-appointments are not fast.
Replies to "Seek help from a Carcinoid Specialist. It is now referred to as NETS (Neuroendocrine Cancer) Call..."
That sounds great. Don't delay. There s a new scan called Gallium 68 and just the end of January a new drug called PRRT was just approved for use in the U.S. I wish you the very best and get to see that Specialist ASAP.
That is good that the 24 hour urine was negative. Do you have the blood serotonin levels checked periodically or is that something that is not used for the rectal carcinoids?
Teresa
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Teresa and @carcinoid, Dr Anthony told me the 24-hr urine test was not helpful for rectal carcinoid. However, I did have one 3 years ago because my internist said if it had somehow metastacized to lungs or liver, for instance, it would come back positive. I have been told by a local support group widow that a NETS specialist has moved to Dallas from another state. I think to UTSW, which is now a top-ranked cancer hospital, same as MD Anderson. I need to seek him out, I guess. Thank you.