About NCAN

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.
 
 Since 2003 NCAN has had a toll free hotline has been answered 7 days a week from 9 am to 9 pm EST and have mailed out free information packets to tens of thousands of patients. It has been our honor to help those who have reached out to us during their darkest times. It always helps people to know that we can totally understand and guide them since we have been through this journey ourselves.
 
NCAN has produced over 85 conferences worldwide virtual, national and regional. These events have been beneficial for thousands of patients and their families, keeping them up-to-date on information impacting the decisions made regarding their care, including new diagnostics and treatments available and upcoming.
 
NCAN exhibits at medical trade shows and medical meetings such as NANETS, ASCO, ASCO GI, Digestive Disease Week, Interventional Radiology, The American Association of Endocrine Surgeons, & local fairs. We contribute to medical research whenever funding is available. Recipients include The Carcinoid Cancer Foundation, The NY Presbyterian Medical Center, LSU NET lab replacement, LSU NET Research Fund, The Doctors Cancer Foundation, The Feinstein Institute for Medical Research, University of Iowa, Vanderbilt University, The University of Kentucky and NANETS.

 

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.

Neuroendocrine tumors are not as rare once thought. Over 12,000 new patients are diagnosed each year and as many as 125,000 patients 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?
  • Over 90% of all Carcinoid/ NET patients are incorrectly diagnosed and treated for the wrong disease.
  • Average time from initial onset of symptoms to proper diagnosis exceeds five years.
  • Majority of specialists are not aware of current diagnostic and treatment options.
  • Physicians still believe neuroendocrine tumors are benign, slow growing and do not metastasize. Countless surgeons trust removal of the tumor will cure the patient and no follow–up is necessary.
  • Irritable Bowel Syndrome (IBS) and Crohn’s are the two most common misdiagnoses for patients with midgut Carcinoid.
  • Most prevalent Carcinoid / NET symptoms are diarrhea, constipation, abdominal pain, wheezing, flushing, heart palpitations, and blood pressure fluctuations.
  • There are a few simple tests to aid with the diagnosis including a 24 hour urine test for 5-HIAA levels. Blood tests include Serum Serotonin, (NSE), Chromogranin-A, Pancreatic peptide, substance P, Gastrin, Neurokin-A.
  • Other Diagnostics include CT Scans, MRIs, Octreotide Scans, MIBG Scans, Gallium 68 scans, and Copper Cu 64 Dotatate
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