neuroendrocrine tumors

Hi Beth,

I was diagnosed - or should I say re-diagnosed - with this type of cancer about three weeks ago.  My original diagnosis was for stage IV cholangiocarcinoma in June 2010, with mets to my liver and bones.  The original pathologist and the second opinion (done by City of Hope, guess premier cancer hospitals make mistakes too) confirmed cholangio.  To make a long story short, NET cells were found in my lymph nodes in May 2012.  However, my doctors continued to treat me for cholangio as it was believed I had two rare cancers.  I had an octreotide scan in November last year and finally was able to see a neuroendocrine carcinoid/carcinoma specialist (Dr. Edward Wolin with the Samuel Oschin Cancer Center at Cedars Sinai) in January of this year who confirmed I have had PNET (of the carcinoid type) all along, that it's slow growing, and I have a much better chance of surviving for 10 - 20 or more years.  My oncologist and liver specialist did say I was odd as most stage IV cholangio patients don't do as well as I did - in other words, I should have gone into the light long ago.  I started Sandostatin LAR immediately, having my first shot on January 24th (ouch!)  Hopefully you are being treated by a specialist, as this is such a rare disease that many oncologists aren't aware of new and better treatments out there.  I can give you the skinny on Dr. Wolin and some info regarding his treatment plan for me.  Take care!

Andrea