We are Zebras
During the late 1940s, Dr. Theodore Woodward at the University of Maryland School of Medicine coined the phrase, "when you hear hoofbeats, think horses not zebras." The intent was to have his interns make independent diagnoses without resorting to the concept of some exotic disease that might make an impression during their studies. Since there are more horses than zebras in the United States, this statement maintained a strong relevance to the beginning stages of diagnosis. Gradually the statement gained wide acceptance in the medical community. Several rare diseases, including neuroendocrince cancer, claimed the zebra as a mascot, to highlight the flaw in this method of diagnosis. Diagnosticians have noted; however, that the "zebra" type diagnosis must nonetheless be held in mind until the evidence conclusively rules them out ("Zebra Medicine," Wikipedia 2015). In making the diagnosis of the cause of illness in an individual case, calculations of probability have no meaning. The pertinent question is to ask whether the disease is present or not. Whether it is rare or common does not change the odds in a single patient. If the diagnosis can be made on the basis of special criteria, then these criteria are either fulfilled or not fulfilled (Harvey, A. M. et al., 1979).
Wait and See vs. Accidental Discovery
For many zebras, diagnosis takes the form of a wait and see strategy, which leads to a misdiagnosis or accidental discovery. The average patient has had this disease between five and seven years. Diagnosing the difference between horses and zebras can appear very slight, thereby making near observations quite difficult. Both horses and zebras are similar in appearance, subject to the same diseases, and are four gaited. No wonder zebras are forced to live without answers, feeling lost and invisible to the medical community. They are often misdiagnosed with Irritable Bowel Syndome, Crohn's Disease, menopause, and mental conditions. Further, those that get a diagnosis are put into treatments for different cancers, such as pancreatic cancer and lung cancer, which are largely different from those with neuroendocrine cancer. Many are told that there is no cure and that nothing can be done. Others are told that their cancer is inoperable. Some even undergo operations and are told that they are cured. It is plain to see that there is a need for a standardized diagnostic protocol for eary diagnosis, one that is readiliy available for frontline primary care doctors.
The zebra, known for its heightened senses, becomes unpredictable and has a tendency to panic while under stress. This instinctive nature makes them hard to domesticate. Similarly, NETS patients have learned to be suspicious and question each diagnostic attempt. They fear more failure, another dead-end, and want to rely more on their own beliefs. This behavior is viewed as uncooperature, stubborn and harmful to the patient-doctor relationship. Feeling forced into a greater understanding of their disease, they adopt the nomadic nature of the zebra, and travel out of state to see a neuroendocrine expert.
There are three main breeds of zebra: Plains Zebra, Grevy's Zebra, and Mountain Zebra. They rarely interbreed, and each zebra displays a different pattern of stripes. Experts in zebras can identify individual zebras by these patterns, and it is believed that the zebras identify each other by their stripes. Similarly, the neuroendocrine patient is divided into three categories: Foregut, Midgut, and Hindgut. Just like the zebra, each category has its own specific characteristics. Often only a trained expert can identify neuroendocrine cancer, and through the use of special laboratories, specific treatments can be established. That said, it is important to point out that no two NETS patients are alike.
The Arizona Carcinoid and Neuroendocrine Foundation, Inc., along with the Arizona Carcinoid Team, are committed to supporting its group members and provide awareness to the community at large. It is our hope that we can bring a Neuroendocrine Center of Excellence to Arizona.