Region's First Clinic for Carcinoid Cancer Opens
Treatment and Research are the Focus of Monthly Clinic
Carcinoid cancer turned Ruth Gerdes into a crusader. Unsatisfied with a diagnosis that would have led her to wait for the slow-growing tumors on her liver to take her life, the Auburn, Neb insurance agent turned to a transplant surgeon at The Nebraska Medical Center for a revolutionary surgery that would save her life.
That was nearly two years ago. Since recovering from that surgery, Gerdes has been a national advocate for the liver resection technique that helped save her life. Her surgery is believed to be the first of its kind performed in the United Stats. After seeing dozens of carcinoid patients referred to The Nebraska Medical Center by Gerdes, the hospital decided it was time to set up an organized clinic dedicated to providing comprehensive information to people with the disease.
“The carcinoid clinic at The Nebraska Medical Center is a place for patients to come and be evaluated, and get information,” said Jean Botha, MD, the transplant surgeon who treated Ruth Gerdes. “The patients wouldn’t necessarily have to be treated here if they don’t live here, but they get an opinion from a group of people who are dedicated to treating this disease.”
Because of news of her revolutionary surgeries in 2006 and 2007, Gerdes has become an unofficial ambassador for carcinoid treatment at the medical center.
“People all over the world find my name on-line,” Gerdes said. “Many of them have been told they’re inoperable, just as I was. What’s so exciting about this clinic is it will be an opportunity for them to learn about options for treatment they may not have known existed.”
Ruth Gerdes’ carcinoid tumors were found during an MRI for another procedure. It was the fall of 2006. After having one tumor removed at a hospital in Lincoln, the surgeon there suggested she contact The Nebraska Medical Center.
About the same time, a family member, also a University of Nebraska Medical Center (UNMC) medical student offered the same advice.
“He had done a surgical rotation with Dr. Botha and raved about this doctor who was believed to be one of the best liver surgeons in the world,” recalled Gerdes.
All the while, her family doctor, Michael Zaruba, MD was talking with carcinoid experts around the world. They did not believe Gerdes was a good candidate for surgery. Despite that advice, Dr. Zaruba also suggested Gerdes come to Omaha and meet with Dr. Botha.
“We were a good match, he was upbeat and confident, but never arrogant,” said Gerdes. “It turned out to be exactly the right time and place for me to be diagnosed with carcinoid cancer.”
What followed were two major surgeries. Taking advantage of the liver’s ability to regenerate, Dr. Botha removed the tumors on the left lobe. He also performed a ligation of the portal vein connected to the right lobe. Three months later, after the left lobe re-grew without the tumors, he operated on the right lobe. When it was over, the 22 tumors that had been on Gerdes’ liver were gone.
When she left the hospital, Gerdes partnered with the Caring for Carcinoid Foundation and began referring other patients to The Nebraska Medical Center.
Dr. Botha treated many of them.
“Most of these patients become very well informed about their disease,” he said. “They’ve scoured the internet and have been to a number of places before they come to us. They are surprised that there’s a place where they can get everything all in one place.”
The Clinic’s Focus
The Carcinoid Clinic at The Nebraska Medical Center will offer patients quality and comprehensive care. Patients will meet doctors with a variety of specialties during their clinic visit.
“The multidisciplinary nature of the carcinoid clinic is important,” explained Jean Grem, MD, medical oncologist at The Nebraska Medical Center and professor of internal medicine at UNMC. “It offers the patient input from both the surgical and internal medicine and medical oncology perspectives.”
Patients at the clinic can expect to consult with a medical oncologist, surgeon and even a family practice physician. Dr. Michael Zaruba, of the Auburn Family Health Clinic, Ruth Gerdes’ family doctor is also involved.
“As a family practice physician, I have learned more about carcinoid cancer than I ever thought I would need to know in my career,” Dr. Zaruba said. “Ruth’s case also allowed me to realize how important it is for patients to be active participants in their health care.”
Patient education is one of the key missions of the clinic.
“Knowledge is power for these patients. They can make decisions about their care,” said Dr. Botha. “Most times they haven’t been fully informed about their condition and do not know what options are out there to help them.”
Most surgeons know little about neuroendocrine tumors such as carcinoid. According to Dr. Botha, the average surgeon may consult with one such patient every couple of years. He has seen 30 in the two years since Gerdes began referring fellow carcinoid patients to Omaha.
“That’s part of the impetus for this new clinic. We’ve been stunned by the number of people who’ve come to us with that disease,” said Dr. Botha. “I suspect there’s more to it; that the prevalence of the disease is greater than we thought. That’s the ground work for some of our research studies.”
In addition to providing treatment to patients, the carcinoid clinic will also have a significant role in research. A grant from the NU Foundation provided money for the clinic to hire a research nurse who will work closely with the multidisciplinary physicians.
“This research nurse is also going to work with scientists and hopefully extend the clinical research into laboratory research that will be translated back into clinical results at the end of the day,” said Dr. Botha, also an associate professor of surgery at UNMC.
The research could also reach well beyond the patients seen in Omaha.
“We initially plan to establish a neuroendocrine tumor registry,” said Dr. Grem. “That will allow collection of information about the patients and environmental exposures, as well as storage of tumor tissue and blood samples for future research.”
The physicians involved with the clinic believe The Nebraska Medical Center and UNMC is the ideal place for such a clinic. The medical center is home to an internationally known liver and intestinal transplant program and the UNMC Eppley Cancer Center. The Eppley Cancer Center is recognized by the National Cancer Institute (NCI) and is a founding member institution of the National Comprehensive Cancer Network (NCCN). Doctors hope the medical center’s reputation for patient care and research, along with a convenient geographic location in the center of the U.S. will make visiting the clinic a realistic option for patients from all over the country.
Dr. Botha said, “Our hope is to turn this disease away from being a medical curiosity to being something that is curable.”
The carcinoid clinic operates the last Friday of each month. Patients interested in contacting the clinic can call 1-800-401-4444.