In 1998, I was shocked when a 14 cm tumor was discovered on the tail of my pancreas. Surgery successfully removed the tumor, but left only 30% of my pancreas. The tumor was diagnosed as a pancreatic neuroendocrine cancer. Less than 5% of all pancreatic cancers are neuroendocrine. This type of pancreatic cancer is much slower growing than the more common type of exocrine pancreatic cancer.
But it did grow again, and in 2004 a 5 - 6 cm tumor of the same kind was identified on the head of my pancreas. Further surgery was no longer an option due to the massive vascular reconstruction done in the first surgery. Treatment for this tumor consisted of CyberKnife radiation, which "stunned" the tumor enough that it did not grow for approximately 2 years. Then the tumor started to invade my stomach. I currently receive monthly injections of Octreotide, which appears to have stabilized the tumor at 5 cm.
As a result of the tumor, the surgery and treatments, and complications of the bile duct, I have numerous digestion, absorption, and insulin related needs.
For more information about pancreatic neuroendocrine cancer, I highly recommend visiting the website for
Caring for Carcinoid Foundation. This organization has raised nearly 6 million dollars to fund research for improved diagnosis and treatment of neuroendocrine tumors and provides up-to-date information about on-going research efforts. There is a wealth of valuable information about neuroendocrine tumors for newly diagnosed patients, as well as information about clinical trials, educational resources, and patient support.
The Carcinoid Cancer Foundation is another highly informative and helpful resource for individuals with neuroendocrine cancer. It provides an excellent directory of physicians who specialize in diagnosing and treating neuroendocrine tumors, as well as information about support groups, conventions for physicians and for patients, and access to previous presentations by physicians on these rare type of tumors.
Another great resource is Pancreatic Cancer Action Network.