Friday, November 9, 2012

NET Cancer Awareness Day- November 10

Worldwide NET Cancer Day is 
Saturday, November 10.


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  • NETS are the "zebras" of the cancer world.   When doctors are in medical school, they learn when diagnosing illnesses that they should be looking for horses, or common disease causes, rather than zebras, or rare causes. NETS are rare, occurring in approximately 35 in 100,000 cancer diagnosis annually. That is why NETS are zebras, their unique stripes being a symbol of the disease.

  • Neuroendocrine tumors (NETs) arise in cells that can produce hormone-like substances, and arise primarily in the gastrointestinal tract, but can also be found in the pancreas, lungs, and other organs. 

  • Neuroendocrine cancer, is listed with the National Organization of Rare Disorders. 

  • Because NETs are rare, over 90% of all NETS are incorrectly diagnosed and treated for the wrong disease.  Many patients go untreated for years and have been told they have another disease. Patients with mid-gut NETs for example, have often been told they have Crohn's disease or IBS –irritable bowel syndrome.  From initial onset of symptoms the average time to proper diagnosis exceeds five years. 

  • Because neuroendocrine cancer is rare, the public, and sometimes even the medical profession, lacks full awareness. 

  • When the tumors are found early and treated, many NET patients can experience excellent longevity. On the other hand, failure to diagnose the disease, or a ‘wait and see,’ approach, has dire consequences, as in the case of Steve Jobs, founder of Apple,who had a pancreatic neuroendocrine tumor similar to the one that I have. 

  • Because of the disease’s rarity and complexity, it is important to obtain care at a center specializing in the care of neuroendocrine cancer. There are a handful of such centers throughout the U.S. and in Europe. Notable among these, is the NET clinic within the Ochsner Health Care System in Kenner, LA, just outside New Orleans (504-464-8500).  Having now treated in excess of several thousand NET patients over many years, the team of doctors and care providers in Kenner have a 80% 5 year survival for patients with metastasized small-bowel NETs. 

  • Because of the rarity of NETS, it has had very low priority for funding in the medical research arena. With new diagnoses of neuroendocrine cancer increasing by more than 5% annually, the need for funding for medical research for these rare tumors is urgent. 

  • Donations are invited to: 

The Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation also provide incredibly useful information for people with NET cancer.  

Thanks to Jeff Drifmeyer, the NET Cancer Awareness Day website, and the Northwoods Nets group for ideas for writing this blog post.