On average, it takes five years to be pinpointed. It is misdiagnosed as many as 90 percent of patients though it is the second most common gastrointestinal cancer after colon cancer.

“It’s not well understood, but our research shows that the rate of occurrence has more than doubled from 1994–2009."

Its symptoms vary greatly. They may be vague, fluctuate in intensity and can affect many different areas of the body. Common signs like diarrhea, wheezing, bloating, or nausea are often chalked up to other conditions like Crohn’s, or dismissed altogether.

“It’s a complex cancer,” says Dr. Simron Singh, an oncologist with Sunnybrook Health Sciences Centre in Toronto. “It’s not well understood, but our research shows that the rate of occurrence has more than doubled from 1994–2009. Once thought of a rare cancer, it’s much more common than we think.”

In fact, it’s the fastest growing type of cancer worldwide (representing about two percent of all cancers). An estimated 15,000–20,000 Canadians have NETs.

Delayed diagnosis at a late stage means a poor prognosis since the tumours are more likely to have metastasized or spread over time. Earlier detection and improved awareness among both physicians and patients can lead to better outcomes. NETs can be identified through urine, blood, or imaging tests.

The quest for answers

Jackie Herman was fortunate that her journey from symptoms (persistent diarrhea) to diagnosis took just four months — far less than the average. In 2008, she underwent radioactive ablation — just one of the treatments available  — to remove NETs found on her liver.

“I’m one of the lucky ones,” she says. “My cancer was caught early on. After surgery, I’m able to live a full, active life.” That includes volunteering as President of the Carcinoid Neuroendocrine Tumour Society of Canada. Herman discovered the association as a NET patient. “It literally changed my life.”

Now, she is hoping to do the same for others as they navigate their way, from diagnosis to treatment. “It’s important to be your own advocate,” she says. “If you have symptoms that are vague or mild and you’re not getting a proper diagnosis, be persistent to find answers.”