“An
investment
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pays the best
interest.”
— BENJAMIN FRANKLIN
21 Facts About Neuroendocrine Cancer.
Neuroendocrine cancer is a complex and often misunderstood disease, affecting thousands worldwide, yet it remains under-recognized. Below are 21 key facts that shed light on the challenges, symptoms, diagnostic procedures, and prevalence of neuroendocrine tumors (NETs). Understanding these facts can lead to better recognition, early diagnosis, treatment, and favorable outcome of this elusive disease.
FACT 1:
Over 90% of All Neuroendocrine Tumor (NET) Patients are Incorrectly Diagnosed and Treated for the Wrong Disease.
FACT 2:
Average Time From Initial Onset of Symptoms to Proper Diagnosis Exceeds Five Years.
FACT 3:
The Majority of Specialists are Not Aware of Current Diagnostic and Treatment Options for Neuroendocrine Cancer.
FACT 4:
Physicians Still Falsely Believe NETs are Benign, Slow Growing, and Do Not Metastasize. Countless Surgeons Mistakenly Trust Removal of the Tumor Will Cure the Patient and No Follow–Up is Necessary.
FACT 5:
Irritable Bowel Syndrome (IBS) and Crohn’s are the Two Most Common Misdiagnoses for Patients with Midgut Carcinoid.
FACT 6:
Most Prevalent Carcinoid/NET Symptoms are Diarrhea, Constipation, Abdominal Pain, Wheezing, Flushing, Heart Palpitations, and Blood Pressure Fluctuations.
FACT 7:
Early Diagnosis Leads to Better Outcomes.
FACT 8:
A Few Simple Blood Tests, Including Serum Serotonin, (NSE), Chromogranin-A, Pancreatic Peptide, Substance P, Gastrin, 5-HIAA and Neurokin-A, Can Aid with Diagnosis.
FACT 9:
Other Diagnostics Include CT Scans, MRIs, Octreotide Scans, MIBG Scans, Copper 64, and Gallium 68 Scans.
FACT 10:
Over 171,000 People are Living with NETs in the United States.
FACT 11:
Some Types of NETs Do Not Cause Symptoms, While Others Cause General Gastrointestinal and Respiratory Symptoms That Mimic More Common Diseases.
FACT 12:
Unlike Most Other Cancers That Start in One Place, NETs Can Occur Wherever There are Neuroendocrine Cells in the Body.
FACT 13:
Most NETs Occur in the Gastrointestinal (GI) System, Which Includes the Stomach, Intestines, and Other Organs.
FACT 14:
Pancreatic Neuroendocrine Tumors are different from Pancreatic Cancer (adenocarcinoma).
FACT 15:
Some Pancreatic Neuroendocrine Tumors Cause Symptoms Because of the Different Hormones They Make and Release.
FACT 16:
Other Types of Pancreatic NETs Do Not Make and Release Hormones, But May Cause Symptoms When They Grow and Spread.
FACT 17:
Lung NETs make up to 2-3 % of all lung tumors. This increases to 14% if we include lung NEC. Lung NET represents about 25% of all types of NETs.
FACT 18:
Some Types of Lung NETs Can Cause Symptoms That Make Them Seem Like Other Respiratory Diseases. However, Some Patients May Not Have Symptoms at the Time They are Diagnosed.
FACT 19:
GI NETs are the Second-most Common GI Tumor After Colorectal Cancer.
FACT 20:
The Number of People Diagnosed with NETs has Been Increasing for Years, Likely Due to Advancements in Diagnostic Imaging, and Awareness Efforts.
FACT 21:
Neuroendocrine Carcinoma (NEC) is a More Aggressive Form of NETs and are a Greater Challenge to Treat.
