Just found out about this on the ACOR Carcinoid group. There is a new handbook that is very good at explaining NETs and Carcinoid to non-medical people and gives lots of valuable information (including about Carcinoid Crisis which I have hammered on lately). The Zebra Talk Handbook is available here:
The Philly NETs which is a resource/support group for NETs/Carcinoid. Simply click on the Adobe Logo below the image and download it. Thanks to the folks who worked to produce this.
I also have it available here: zebra_talk_handbook-2014-06-08 , if you have a problem with the other website. This is not guaranteed to be the latest as they plan to update it regularly.
I urge all people diagnosed with NETs or Carcinoid Tumor to find out all they can about the disease. Many medical people do not know. They need your help! Be your own advocate. Start with the pamphlet above, then read Neuroendocrine Tumors – A Comprehensive Guide to Diagnosis and Management and give a copy to your doctor! Yes, it’s technical and scary, toughen up, you will need to be tough to survive this. During this also go and read everything on The Carcinoid Cancer Foundation website. While doing all of this join online and local support groups. Knowing others with the disease will help tremendously both with information and emotionally.
May we all have the best possible outcomes!