Neuroendocrine Carcinoma, Unknown Primary, Lymph Node Mets

Mustard, go to this website: www.carcinoid.org. It is the website of the carcinoid cancer foundation. Neuroendocrine cancer is a type of carcinoid cancer. I have carcinoid, have had two surgeries and take a monthly injection of sandostatin to hold my metastasized tumors in check. My primary has not been located yet either. The good thing about this type of cancer is that it is usually slow growing. The Carcinoid Cancer website lists specialists nationwide. In order to be listed there, a doctor has to have specialized in this fairly rare cancer for 15 years and to have been published on the subject. I don't know where you are, but in Portland, Oregon, I found my specialist Dr. Rodney Pommier whom I can heartily recommend. Also, there is a carcinoid cancer conference September 27-30 in Norfolk Virginia which you and your husband might find interesting to attend. I went to the one last year, and all the primary doctors in the field were there and explaining their research and the latest treatment methods. I'm sorry I didn't see your posting sooner, but I was in the hospital having the largest tumor removed from my abdomen. They thought it was the primary because it was the largest, but it wasn't. Dr. Pommier is going to examine my rectum next. It's good if they can find the primary, but they can's always. A good test to have is a full body octreotide scan, which should reveal every tumor in the body, although sometimes it has a false positive. The tumor it "found" on my kidney turned out not to be there when the doctors got inside and looked for it. Feel free to contact me for support if you like. I'm Jayne Freeman at danjaynefreeman@sprintmail.com. Good luck to you and your husband. Jayne