Charlotte conference on the cancer that killed Steve
Jobs
By Karen Garloch
Posted: Monday, Sep. 15, 2014
Karen Garloch writes on Health for The Charlotte Observer.
Her column appears each Tuesday.
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Karen Garloch
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On Health blog
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- NEUROENDOCRINE CANCER AWARENESS
NETWORK
Maryann and Bob Wahmann run the
Neuroendocrine Cancer Awareness Network, which holds its national conference in
Charlotte Thursday through Saturday.
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.
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.”
