IOWA CITY — Neuroendocrine tumors — like the one discovered on Apple co-founder Steve Jobs' pancreas in 2003 — are manageable, as are the misleading symptoms they cause.
That's what a group of physicians and nurses hopes to convey to patients attending the upcoming Neuroendocrine Cancer Awareness Network's 2017 Iowa Neuroendocrine Cancer Patient Conference at the University of Iowa Hospitals and Clinics, home of the Holden Comprehensive Cancer Center, which operates one of about a half-dozen neuroendocrine cancer programs in the U.S. It is the only program to have received a Specialized Programs of Research Excellence grant to study the tumors, known as NETs.
With the five-year, $10.67 million SPORE grant, the Neuroendocrine Cancer Program is developing new ways to identify NETs and genetic markers for NET. Another part of the project involves developing clinical trials to target tumors with the maximum dose of medication while decreasing damage to the kidneys and bone marrow through a combination of drugs, nuclear physics principles and imaging techniques.
"It will be a great educational day for folks, but it will also highlight the fact that University of Iowa is one of the prominent research facilities in this area," said Joseph Dillon, an endocrinologist at the cancer center who also is an associate director of the Endocrinology Clinical Fellowship Program and associate professor of Internal Medicine — Endocrinology and Metabolism at the Carver College of Medicine.
It will be the NCAN's 59th such conference since 2003.
"We want to help bring awareness and empower patients with the correct information to make smart decisions on their care and treatments," said NCAN founder Mary Wahmann, who learned she had NET cancer in February 2001 after seven years of being misdiagnosed.
"With early diagnosis and treatments, the chance of survival and outcomes are much better," said Wahmann, who has been able to control her symptoms with medication.
The group hopes the conference will raise awareness among patients and in the medical community about the slow-growing tumors, which often go undiagnosed until secondary tumors have spread to other parts of the body, such as lymph nodes, bones or the liver.
NETs are slow-growing tumors that can arise in the bowel, pancreas, lungs and other places in the body where endocrine tissue is present, Dillon said.
"They can be in areas of the bowel that are very difficult to see with the usual tests we do," he said.
About 50 percent of NETs start in the small intestine and can be smaller than 1 centimeter in diameter, so they can be difficult to detect, especially because the scope used in colonoscopies can reach only through the large intestine to the end of the small intestine, leaving about 20 feet of unexplored territory.
The "unusual" symptoms of NETs can further delay an accurate diagnosis, Dillon explained.
The tumors can produce up to two dozen hormones or chemicals that cause flushing, diarrhea, wheezing, arrhythmia, water retention and heart failure among other symptoms. Symptoms vary among NET patients, and Wahmann suffered abdominal pains and rectal bleeding along with diarrhea.
"People don't think of this tumor when patients come in complaining of problems like flushing and diarrhea," Dillon said, adding people usually develop NETs in their 40s or 50s, so doctors may attribute some symptoms to menopause in women.
Dillon hopes it will occur to physicians to conduct radiology and blood tests when patients exhibit these warning signs rather than wait for the tumors to spread somewhere more obvious, at which point the cancer has advanced to stage 4. Unlike other cancers at that point, stage 4 NET cancer patients can live another 15 years.
"That number of how long the person can live does get bigger as we go into the future," Dillon said. "Even over the last five years, we've had probably four or five medications that have been FDA approved."
Those years should be enjoyable, and having to deal with sudden bouts of severe diarrhea without warning can detract from that. This symptom is caused by the tumors' overproduction of serotonin in the bowel.
"It doesn't mean that (NET patients) are immensely happy," Dillon said with a slight chuckle, explaining the serotonin produced in the brain stays in the brain and the serotonin produced in the body stays in the body.
A medication that gained FDA approval earlier this year, Xermelo, combats that symptom by inhibiting serotonin production in the tumor. Its the advancements that have been made to improve patient quality of life that Dillon is excited about.
"I look forward to talking with folks about that," he said of his opportunity to speak during the conference.
The conference will be from 8 a.m. until 3:45 p.m. Saturday in the atrium on the seventh floor of the Iowa City hospital. An expert panel of six physicians and three nurses from the Holden Comprehensive Cancer Center will speak during the event, as will Wahmann, who will speak on how patients can be their own advocates. Those attending will have an opportunity to ask questions during the last 45 minutes of the conference.
The event costs $20 to attend. Breakfast and lunch will be available. To register, visit http://conta.cc/2y5j8Wm.