I am 49 with carcinoid syndrome. I am going to have a tumor removed from my breast soon. I spent 14 years having physcians who knwe nothing about carcinoids and I am afraid those in orduring my surgery will know just as little. I have been through so much and I am now paying the price for assuming doctors know how to deal with carcinoid. 14 years ago I had a carcinoid removed from my colon. I moved and informed all doctors about ti along with medical reports. Told them all to do follow up with 24 hour urine and normal tests. Most didn't have a clue what I was even talking about. Others brushed it aside with the comment "it was so rare to have it in the first place it would be impossible to get it again. Honest. Another said this: "i never thought to see a surviver of carcinoid." I developed severe asthma, sever anemia, and a host of other commom symtoms from carcinoid. Almost died last year and a nurse...Not my doctor said, "everyone is missing something". Sent me to an oncologist who knew more than the one the year before. He was amazed at the stupity of 14 years of physcians who knew I had carcinoid and never ran one test. Now carcinoid is in my liver and I get $6,000 injections a month. It is a miracle I am alive. This is why I cannot assume the team in or will know what they are doing during surgery. Please someone tell me where I can get information that will prepare them for carcinoid crisis complications.