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About NCAN
2024 IS NCAN'S 21st year of service to the neuroendocrine cancer community. The Neuroendocrine Cancer Awareness Network (NCAN) is a non-profit organization dedicated to raising awareness of Neuroendocrine Cancer, providing support for caregivers and people with NETs, and funding for NET cancer research. Since 2003, it has been our mission, or as we like to say, our passion, to educate and support the NET community as a whole. That’s our thing.
Patient Success Stories
• Maryann Wahmann: After years of misdiagnoses, Maryann was finally diagnosed with carcinoid cancer, a type of neuroendocrine tumor. She co-founded NCAN to ensure others wouldn’t suffer as she did. Maryann’s advocacy has saved lives, including her daughter’s, who was diagnosed early thanks to Maryann’s persistence.
• Ronda Ayala: Diagnosed with neuroendocrine pancreatic cancer, Ronda underwent a Whipple procedure and was initially told she was cured. Through her advocacy work with the Whipple Warriors and NCAN, she met Maryann Wahmann, who insisted on follow-up checks. This vigilance saved Ronda’s life when her cancer returned.
• Dave Vickery: A long-term carcinoid survivor, Dave has dedicated over 21 years to supporting others with NET. He founded the Michigan Carcinoid Group, focusing on “Sharing Information, Caring for Each Other.” His efforts as part of NCAN have provided invaluable support and information to countless patients.
What is Neuroendocrine Cancer?
Neuroendocrine tumors (NETs) is the umbrella term for a group of unusual, often slow- growing cancers, which arise from neuroendocrine cells found throughout the body. For years this group of cancers was identified as a specific disease called carcinoid. This term is being slowly replaced in medical literature by the term NETs.
While generally slow growing, there are more aggressive NETs such as neuroendocrine carcinoma being diagnosed more frequently.
Neuroendocrine tumors are not as rare once thought. Over 12,000 new patients are diagnosed each year and as many as 171,000 patients (according to cancer.net) are living in the US today- AND the number of diagnoses is increasing by more than 5% annually.
Where are NETs Usually Found?
The most common sites for NETs to occur are in the digestive system, lung and pancreas, but they can also arise in many other parts of the body. The place where a NET first appears is called the primary site. However, the NET may spread to other parts of the body like the lymph nodes, liver or bones. If this occurs your doctor may refer to the NET as a secondary tumor or metastasis.
NETs are overlooked regularly during the diagnostic process. Many patients go untreated for years and have been told they have another disease. If the tumors are found early and you get proper treatment, you can live a long life. Neuroendocrine cancer is listed with the National Organization of Rare Disorders. Because neuroendocrine (NET) cancer is considered rare and due to a lack of public awareness the disease has had a low priority for medical research.
Did You Know?
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