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Listmates -

Regarding the recent discussion of Carcinoid syndrome, with the permission of the originating listmember I'd like to clarify syndrome vs tumor.

        The Carcinoid "tumor" is separate from the "syndrome".  People can have the tumor but no syndrome, and the syndrome but the tumor either isn't obvious or has been removed (and the syndrome remains).  Whether you can have the syndrome but NEVER have a tumor is something I haven't investigated since my Mom was just the opposite (tumor, no syndrome; indeed, no symptoms at all).
        Carcinoid ("cancer-like") isn't "carcinoma", it's a type of endocrine-based cancer that isn't as virulent or invasive as other cancers, or the carcinoma that was mentioned.  The "oma" on the  end..... we don't want that!  The endocrine base of the carcinoid tumor makes it cause the syndrome, which is the flushing, redness, and sweating, etc.  The two, actually, are separate entities though certainly related.  It would seem logical that the syndrome would act as a 'red flag', a warning of future problems and could therefore be seen as a good thing, since the doctors would therefore be looking for the slow-growing carcinoid tumor.  When I was active on the Carcinoid ListServ I learned that the syndrome isn't curable but can be controlled with injections of Sandostatin.
         Carcinoid tumors are rare - I was told they represent less than 1% of all cancerous tumors - and according to my endocrinologist the tendencies run in families, much like CD.  As of a year ago there was no accepted chemotherapy, but once you have the tumors they can be surgically removed, and regrow so slowly that you could very well die of old age before they become a problem.
           The Carcinoid website I've used the most is    www.Carcinoid.org

            Hope this is helpful.

            Kathy

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