A battle with neuroendocrine tumors, the rare cancer that took Steve Jobs' life, empowers Zuniga to educate others fighting uncommon diseases.
You probably haven’t heard of neuroendocrine tumors (NETs), or may have learned of it when Steve Jobs died of the condition in 2011. Arizona resident Jennifer Zuniga was diagnosed with the condition in 2001. Since then, she’s made it her daily mission to educate and empower others struggling with a rare disease.
The hardest parts of having an uncommon disease, it’s estimated that more than 12,000 Americans are diagnosed with a neuroendocrine tumor each year, are not knowing what symptoms to look for, having to explain over and over again how you feel to doctors, trying to get health insurance coverage, and facing limited resources.
“When you have a more common disease, there are symptoms doctors can point to,” Zuniga said. “With a rare disease, doctors don’t always know what to look for.”
Zuniga was diagnosed early. “I was having my annual mammogram and a lump was discovered in my right breast,” she said.
After she came out of surgery, her doctors told her she didn’t have breast cancer. About a year later, she found another tumor. “It was about an inch away from where the first lump was found,” she explained.
An oncologist who specialized in NETs recognized it as neuroendocrine cancer. Neuroendocrine tumors develop in cells that make hormones, which control a variety of functions, and can develop in the gastrointestinal tract, including your stomach, pancreas, intestines, colon, and rectum. Some people with NETs also develop carcinoid syndrome, a rare condition that occurs when NETs produce too much serotonin. Many people with carcinoid syndrome have frequent and debilitating diarrhea, facial flushing, fatigue and, over time, heart valve damage.
“The diarrhea that I thought was normal, was not,” she said. That symptom alerted doctors that she had neuroendocrine tumors.
October 23, 2017
Janet O’Dell, RN