Most people think Apple founder Steve Jobs died of pancreatic cancer.
But Maryann Wahmann wants everyone to know that was wrong. He really died of neuroendocrine cancer of the pancreas.
It makes a difference, she says, because neuroendocrine cancer, although often misdiagnosed, has a much better prognosis than pancreatic cancer.
“If treated properly, you can live a long time,” said Wahmann, herself a patient who founded the Neuroendocrine Cancer Awareness Network in 2003.
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Wahmann’s group will hold its national patient conference in Charlotte Thursday through Saturday at the Marriott City Center Hotel. About 500 patients, caregivers and health care professionals are expected. (To register, see netcancerawareness.org.)
Although considered rare, neuroendocrine cancer is not as unusual as once thought, Wahmann said. More than 11,000 new patients are diagnosed each year, and as many as 125,000 patients are living with the disease in the United States.
Wahman said she was ill for seven years before she was diagnosed with a form of neuroendocrine cancer in 2001. Before that, doctors mistakenly told her she had irritable bowel syndrome and Crohn’s disease. It’s a common mistake because symptoms, such as diarrhea, are similar.
Jobs often referred to his illness as a “hormonal imbalance,” but multiple respected sources, such as WebMD and Scientific American, give the more specific description – neuroendocrine cancer of the pancreas.
“If Jobs had suffered from the most common form of pancreatic cancer, adenocarcinoma, the chances are he would have died soon after his 2003 diagnosis. But as Jobs later revealed, he had an unusual form of pancreatic cancer known as a neuroendocrine tumor or islet cell carcinoma.”
Most pancreatic cancer arises from the pancreatic cells. But neuroendocrine tumors arise from the hormone-producing islet cells that happen to be in the pancreas. Unlike pancreatic cancer, from which patients often die within weeks or months after diagnosis, neuroendocrine cancer is slow-growing and can be well controlled if caught early.
Many doctors don’t understand the disease, Wahmann said. In 2001, only 10 doctors in the world specialized in the disease, she said. Now there are about 100, including Dr. David Iannitti in Charlotte.
Wahmann and her husband, Bob, run their organization, previously called Carcinoid Cancer Awareness Network, out of their Long Island home, and answer the hotline, 866-850-9555. Their daughter, Tricia, a student at Johnson & Wales University in Charlotte, is vice president.
They chose the zebra for their logo. “In medical school, doctors are taught, ‘When hearing hoof beats, think horses not zebras,’ which means to look for the common, not the uncommon (when diagnosing a patient). Being that a neuroendocrine tumor is rare, we’re thought of as zebras.”
Wahmann said “a lot of patients are very angry” that Jobs chose not to raise awareness about neuroendocrine cancer. “Like Michael J. Fox with Parkinson’s disease … his name could have brought light to it.”
But Wahmann said she understands why some are reluctant to go public. “It’s not glamorous to say that I couldn’t digest my food or I was in the bathroom having diarrhea and that’s why I’m losing weight.”