My Nonprofit Reviews

I was diagnosed with Neuroendocrine Cancer in 2008. It was bad enough to deal with the diagnosis but was more difficult deal with health professionals that did not know much of anything about my cancer. NCAN provided information I need to make informed decision and have hope. They also allowed me to meet health professionals that were more informed about Neuroendocrine Cancer. I can honestly say I may not of been here to write this review without NCAN. The service they provide is invaluable.

I was diagnosed 8/8/08 with Carcinoid cancer. Doctor told me well if you had to get cancer this is the one to get. I am saying he is crazy. At the same time he said it was terminal 12 tumors in liver. They may exend my life a few years. It was inoperable and they would not look for my primary tumor. Even if they found it would not take out. This was a very rare cancer. He was saying no hope just doom and wait to die. Just felt loss hopeless. Top it off had to go to work and see about my kids. Unbelievable each doctor I had at that time said best cancer to get if you had to get. They had no information on disease and did want it. Just went by limited information they had and just passed me around.
There was no plan since doctor said terminal.
Well time passed searched for information and found ICAN in Indianapolis. I learned of ICAN through them. For website I learn exactly what I had and found a Doctor at Ohio State University, Dr. Manisha Shah. She made me realize I can live and focus on that. I did and 2012 they removed my primary tumor in ileum, gallbladder, appendix, most of my left lobe of liver. She discontinued Sandostatin and I am still here. Some times I forget I have carcinoid tumors in liver. The point I want to stress how important NCAN is so old and new patients. It makes a difference in the quality life and your health to have correct and updated information. NCAN provides that.