Hello, I found out in 2009 that I had a carcinoid tumor of my appendix. It was found when they were doing a laporoscopy when looking at my ovaries because of cysts. I had been having many health ailments leading up to that for about 10 years prior. Too many symptoms to go into detail. Many infections ie bladder, vaginal etc...could not find any doctor to diagnose me. It was many years of hell and frustration. My tumor was small enough that they said that the only treatment that was necessary was removal which was done upon discovery. I worry that I should be seen on a follow up basis and that I still might be missing something. But the stress and anxiety from not being well for so long and being told that nothing was wrong when I knew literally in my gut that there was makes me shy away from even looking further into things. I am just hoping I don't have any other problems or other carcinoid tumors sitting in me and slowly growing....I went through so much going from doctor to doctor complaining of my symptoms and them making me feel like I was crazy. One doctor actually started screaming at me when I asked for an explanation of her diagnosis of fibromyalgia and prescribing a tranquilizer. I found out later that I think she committed suicide...it was such a horrible experience all around. Because of the carcinoid I believe I was infertile and I had tried for many years to find out why. Just a lot of heart ache and I want to stick my head in the sand and just ignore that it ever happened. My now doctor says I should write a book.... Can you tell me about your Carcinoid experience and how you knew that you had one and how it progressed to Carcinoid Syndrome? I hope you are doing well...

Wow....last reply in 2015!
I have carcinoid cancer....diagnosed in 2006.

Always searching for others with this.....to help finding others who get it.