The Arizona Carcinoid & Neuroendocrine Foundation (AzCNF)
is an incorporated Arizona non-profit organization with a mission to educate and support patients and caregivers, while promoting awareness to the public.
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What is Carcinoid and Neuroendocrine Cancer?
Carcinoid and other Neuroendocrine tumors (NETS) are hormone-producing tumors that can be found throughout a number of body systems, including the gastrointestinal tract, lungs, appendix, and more. The hormones secreted from these tumors can cause many negative effects. The list of effects are vast, including gastrointestinal upset, flushing, respiratory distress and even heart problems. Because of this, Carcinoid and other NETS are often misdiagnosed.
These cancers are considered rare; however, recent studies prove that Carcinoid and NETS out number the combined totals of stomach and pancreatic cancer cases. Originally thought to be approximately 1.5 to 1.9 cases per 100,000 population, it now appears to be closer to 35 cases per 100,000 population. A review of 35,618 cases during the years 1973 to 2004 confirm the greater incidence numbers (SEER 9 registry data- Dr. Yao, MD Anderson). Using 103,312 cases nationally as a baseline, the real number may be twice that number, with 5.2 clinically significant new cases per 100,000 population annually.
NETS in Arizona
Arizona, with approximately 2.25% of the population, should have about 2200 to 2500 NETS cases with about 55 to 60 new cases annually. If this is true, where are all these cases? The obvious answer is that they are misdiagnosed or unable to be diagnosed. With the intent of promoting awareness of these cancers, ACNF's mission is to also provide multi-faceted support for NETS patients in Arizona. Please visit our 'Who We Are' page to learn more about our mission.