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 Carcinoid 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, and a special pet scan.

Current studies suggest that Carcinoid and Neuroendocrine tumors are not as rare once thought. Over 11,000 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