Neuroendocrine Tumor Cancer: Kept at Bay for Six Years

An unwelcome visitor knocked at our door six years ago this month. Despite our protestations, the visitor chose to stay, settling in and acting out from time to time, causing mischief and worry. 

But the visitor seems to be tiring of us.

Last week, Mark’s annual PET scan results came back clean. No detectable neuroendocrine tumors for the fourth year in a row! Perhaps now, our unwelcome visitor, neuroendocrine tumor (NET) cancer, will finally leave?

NET Cancer: A Zebra in the Medical World

Neuroendocrine tumor (NET) is a type of cancer that forms in neuroendocrine cells, which make and release hormones that control different functions in the body, such as heart rate, blood pressure, and digestion. These cells are found throughout the body, so NETs can affect different organs. NETs most commonly develop in the large intestine, small intestine, appendix, lungs, and pancreas.

NET cancer is uncommon, with more than 12,000 people in the United States diagnosed each year and approximately 175,000 people currently living with the condition. Its cause is unknown.

NET cancer is difficult to diagnose, as patients may not have any symptoms or may have general symptoms such as flushing, abdominal pain, and diarrhea that are often mistaken for other conditions. Indeed, NET cancer often remains misdiagnosed for many years.

Was the Burrito to Blame?

Mark’s experience with NET cancer was typical. He first experienced severe abdominal pain almost 10 years ago. He went to the emergency room and was told it was likely acid reflux or stress-induced anxiety. The possibility of NET cancer was never mentioned. Thankfully, the pain passed and things returned to normal. But a few years later, the same severe pain returned, coincidentally after eating a bean and cheese burrito. Was the burrito to blame?

His primary care doctor thought it was acid reflux – and prescribed an antacid. However, the pain persisted for days, so he went to the emergency room. This time, an astute physician on duty ordered a contrast CT scan after learning that Mark had experienced the same symptoms four years before. The scan revealed a tumor – the size of a small peach! – that was completely blocking his small intestine. He was immediately admitted to the hospital and surgery was scheduled for several hours later. Mark’s NET cancer journey had begun. 

Mark was fortunate that the emergency room physician picked up on the prior symptoms and suspected a tumor. It seems that many doctors are trained to look for what is common rather than rare – “when you hear hoof beats, think horses, not zebras”.

Because of this, the zebra has become a symbol for NET cancer. It serves as a reminder that each patient is as unique as the stripes of a zebra and “the uncommon exists and should not be overlooked.”

To Learn More About NET Cancer:

Neuroendocrine Tumor Research Foundation

The Carcinoid Cancer Foundation

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