UI neuroendocrine cancer specialists help patients today and over the long term

Catherine Crawford was visiting her sister in Austin, Texas, in 1996 when she had a gallbladder attack and had to go to the emergency room. That visit to the ER, and subsequent visits with her own doctor in Kansas and later at University of Iowa Hospitals & Clinics, changed her life forever.

“I ended up in the ER and they told me there were ‘shadows,’” says Crawford, who was living in Kansas City at the time but now lives in Muscatine, Iowa. “They saw these shadows, but they didn’t know what the shadows were, so I had to go through all the CT scans and the MRI, and all the dye. I got back home, and the medical center at Kansas University (KU) diagnosed it.”

“It” turned out to be Von Hippel-Lindau syndrome (VHL), a rare hereditary condition associated with blood vessel tumors of the brain, spinal cord, and eye, as well as an increased risk of kidney cancer and tumors on the adrenal glands as well as neuroendocrine tumors of the pancreas – where it was first found on Catherine. VHL also can cause kidney cysts, pancreatic cysts, tumors near a man’s testicles, and tumors of the ear that can cause hearing loss.

Once diagnosed, Catherine had surgery in Kansas City to have her adrenal glands removed and was treated by the doctors at KU. She went back annually for checkups until moving to Muscatine in 2000. Though she’d been seen by doctors for four years in Kansas and had medical records to back up her diagnosis, Catherine says it took several months to find a doctor in Iowa.

“It took me two to three months to actually find a doctor who would believe that this was what was wrong,” Catherine says. “I had this scar to prove it, I had all these medical records, but it still took a while to get a doctor that said, ‘Oh, I see.’”

She eventually was directed to Holden Comprehensive Cancer Center at the UI, where she met Thomas O’Dorisio, MD, and James Howe, MD, co-directors of the Neuroendocrine Cancer Clinic. The clinic specializes in treating tumors that arise in the small intestine, pancreas, stomach and lung, as well as liver metastases from these tumors.

O’Dorisio and Howe have been her doctors since 2000.

“They know what to expect, and they tell me,” Catherine says. “My family doctor is at University of Iowa Health Care–Iowa River Landing, so they talk with everyone else, and all my doctors know what is going on. I’m dealing with this disease every day of my life, but they’re helping me get through it.”

Howe, a surgical oncologist, says he and O’Dorisio, an endocrinologist who specializes in neuroendocrine tumors, work with many of the same patients and coordinate visits so patients can see both doctors in one trip, in the same clinic. That’s important, he says, because many of their patients are from out of the area or out of state.

“It’s not uncommon for us to see patients who have been to two or three centers already and haven’t gotten the treatment they need,” Howe says. “Patients with these tumors are very well informed. They know what is going on and what they’re looking for. A lot of the patients I operate on aren’t just from Iowa or Illinois; they’re from other states across the country.”

One of the reasons neuroendocrine patients come so far to be treated at Holden Comprehensive Cancer Center is because of the skills and expertise of the staff. UI cancer researchers this year received a five-year, $10.67 million grant from the National Cancer Institute (NCI) to study neuroendocrine tumors in adults and children—the first and only grant of its kind for neuroendocrine cancer. The funds are part of the Specialized Programs of Research Excellence (SPORE) grants through the NCI.

Neuroendocrine tumors are not like other types of cancer, O’Dorisio says. Patients can live for years with the disease, and multiple treatment options are used over a long period of time.

“For the vast majority of these patients, you cannot tell they’re living with this cancer,” he says. “The expectation or obligation, we feel with these patients, is that we should be able to help manage and advise their next best options. This is a chronic disease, like diabetes, and like all chronic disease, this demands continual regular outpatient visits.”

— Molly Rossiter
Winter 2016