Being Diagnosed with Neuroendocrine Cancer: An Unexpected Journey

There are some journeys in life that we plan for meticulously and others, like cancer, that are unexpected, immediate and scary. We refer to cancer as a journey because the diagnosis is just the beginning, the first step of many to follow. At the outset, you will likely have more questions than answers. There will be stops and starts along the way as you learn to navigate the complexities of the medical system and the twists and turns of tests and treatments. At each fork in the road, you will need to decide which course is best for you.

The Special Case of a Rare Cancer

When it comes to cancer journeys, neuroendocrine cancer is definitely one of the roads less traveled. Neuroendocrine cancer refers to all forms of this disease, both neuroendocrine tumors (NETs) and neuroendocrine carcinoma (NEC). Most patients have never before heard of neuroendocrine cancer at the time of their diagnosis. Many primary care doctors are unaware of the signs and symptoms of this cancer. Slower-growing neuroendocrine tumors can remain “silent,”undetected and without causing noticeable symptoms, for a long time. Consequently, diagnosis is often delayed, and as many as half of all NET patients have metastatic disease at the time of their initial diagnosis. Since gastrointestinal NETs can produce symptoms similar to Crohn’s disease and irritable bowel syndrome, some patients have been treated for months, if not years, for a condition they did not have. Sometimes NETs may be mistaken for another cancer that commonly occurs in the same location, such as the lung or pancreas. But a NET in the pancreas is not pancreatic cancer, and a NET in the lung is not lung cancer. This concept can be hard to understand and a challenge to communicate to others.

Because neuroendocrine cancer is rare, it is essential that you learn as much as you can. Arming yourself with information will help you choose the best medical care team to guide you. It is critical to understand that there is no one size fits all or even one size fits most when it comes to this disease. The rule of thumb for NET patients is that everybody is different. Keep this in mind when you are reviewing information, seeking support and speaking to other patients.

You are one of a kind...Like fingerprints and zebra stripes, no two neuroendocrine patients are exactly alike. That’s why many organizations that advocate on behalf of these patients display zebra stripes as their symbol. Another reason we use the zebra symbol is to raise awareness in the medical profession. During their medical school training, doctors are taught the old adage, “If you hear hoofbeats, think horses, not zebras,” meaning that common symptoms usually are caused by common diseases. In NETS, however, we need our doctors to be prepared to “think zebra” as well.