Survivors of a rare form of cancer are looking to raise awareness in their fight against the disease. The group held a fundraiser at a North Fork vineyard over the weekend for neuroendocrine cancer.
The founder of the Neuroendocrine Cancer Awareness Network, Maryann Wahmann – who's a survivor – says the money helps fund outreach and research about the hard to diagnose disease.
“I was misdiagnosed for seven years. I was told I had irritable bowel, Crohn’s disease, ulcerative colitis, I was crazy, I needed more fiber in my diet, and the whole time the tumor was growing in me.”
Wahmann says most insurance companies didn’t even recognize neuroendocrine as a type of cancer until 2009. And doctors struggle to diagnose it because a regular scan doesn’t pick it up.
“I had seven colonoscopies, seven endoscopes and seven different doctors before the last doctor finally found the tumor.”
The National Cancer Institute says there are only about 150,000 people in the country who have neuroendocrine cancer. It is treatable, but it can be fatal. Neuroendocrine cancer has claimed the lives of Apple founder Steve Jobs, actress Audrey Hepburn and Wendy’s founder Dave Thomas.