← Return to My Husband was newly diagnosed with Carcinoid Cancer

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@jenchaney727

@heidilynn4 I am in a similar situation, with only surgery so far and fearful other small tumors are being missed as I'm having Carcinoid syndrome and recent tumor markers came back positive but all scans are negative. I live in Texas but my doc in Kenner, Louisiana specializes in Carcinoid and has just began doing the Gallium 68. It's hard to get scheduled due to low availability of the machine, so I'm not getting that scan until end of march at earliest. It was this group here who gave me that knowledge of the new scan, which is supposed to be better at detecting smaller tumors. Waiting to find more is the worse feeling. I would rather find it and address it head on! Hang in there! I suppose if they are too small to be found, then they are too small to be deadly, so that is a positive hope to hold on to.

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Replies to "@heidilynn4 I am in a similar situation, with only surgery so far and fearful other small..."

He has never had symptoms of carcinoid syndrome yet so we are hopeful there are no tumors in his liver, as I have read that you only experience carcinoid syndrome from primary illeum tumors if it has also spread to your liver, since the liver breaks down the excess hormones that the carcinoids produce unless it is affected too.  Good luck to you, I am hoping we can push Mayo to do a GA-68 scan too just for peace of mind, since it was found in his lymph nodes.