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Surgery to Remove Breast Tumor With Carcinoid Syndrome

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 knew nothing about carcinoids and I am afraid those participating in operation and post care after 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 past carcinoid history and need for testing along with medical reports. Told them all to do follow up with 24 hour urine and normal tests. Most did not 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 this is true as shocking as it seems. Another said this: "i never thought to see a surviver of carcinoid." I developed severe asthma, sever anemia, and a host of other common symptoms from carcinoid. Almost died last year and a nurse...Not my usual doctor (so glad he wasn't in that day...That nurse saved my life)stated, "everyone is missing something. I am going to look for someone who has experience with carcinoid". Sent me to an oncologist the next week who knew more than the oncologist the year before. He was amazed at the stupidity 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 surgery will know what they are doing if I have a carcinoid crisis. Please someone, please tell me where I can get information that will prepare them for carcinoid crisis complications.
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replied January 11th, 2005
Bj - I saw your post, almost a year after you made it and wonder how you are doing? I hope you get this.

Garnet
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