Neuroendocrine Cancers (NETs) are a family of cancers arising from hormone-producing cells throughout the body. They usually begin in the gastrointestinal system, lungs or pancreas. With only about 11,000 new cases per year in the United States, these rare NETs are classified as Orphan Diseases. Patients are often misdiagnosed for many years. Research is underway to improve diagnostic tools for earlier detection and to develop new treatments.

Capital Area Carcinoid Survivors (CACS) was founded in 2001. Then, “Carcinoid” was widely used to describe these types of malignancies. Today, with better understanding, the diseases are more commonly referred to as NET cancers (neuroendocrine tumors). Regardless of the wording change, CACS remains a vibrant support group of and for NET cancer patients and family members. We bring unique perspectives on our illness to our physicians. Open to NET patients, families and caregivers, CACS has been meeting monthly for over 12 years at the Inova Fairfax Life With Cancer Family Center.

Why the Zebra

Zebra is a medical slang term for a surprising diagnosis. The term derives from the aphorism “When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore. By 1960, the aphorism was widely known in medical circles. (source: http://bit.ly/1qyOfPA ).

The problem comes when there really is a zebra behind you.  Local physicians often know little about NET and/or are unaware of current diagnostic or treatment options. Carcinoid/NET is often misdiagnosed as IBS or Crohn’s Disease.

Treating what is expected, instead of confirming that it is/is not NET/Carcinoid Cancer often leads to long delays in accurate diagnosis and proper treatment. If you think you might have Carcinoid Cancer / Neuroendocrine Tumors (typical symptoms listed below), get expert advice.  Ask your physician, or learn more and find a specialist at http://www.carcinoid.org .

The FDA has designated NET as an Orphan Disease.  There are only about 110,000 cases  of NET in the USA (or just .04% of the population), with about 11,000 people newly diagnosed each year.

NET symptoms include:
o Flushing
o Diarrhea
o Abdominal pain/bloating
o Wheezing
o Heart palpitations
o Weakness


1 Response to About

  1. Nan Fuhrman says:

    Queston for the Lexicon Rep: Can Xermelo be used on an “as needed” basis – as at the end of an SSA cycle when the SSA drug is not as effective?


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