If you drew a line straight back between your eyes, you would hit the pituitary gland in about three inches. Though only about the size of a pea, the pituitary is a master regulator of hormone systems throughout the body. It’s also a fairly common origin of tumors. One in every 10,000 people will be diagnosed with a neuroendocrine tumor originating in the pituitary; one in five people will develop a pituitary mass without knowing it. Most of these pituitary masses aren’t cancer – they become dangerous only when they affect pituitary function or grow large enough to squeeze against other nearby structures, often creating headaches or affecting vision. But some pituitary masses are cancer. Knowing the difference can be tricky and treating these diverse pituitary tumors can be especially challenging.
That’s why University of Colorado Cancer Center brings together more than 20 experts to offer multi-disciplinary care for patients with neuroendocrine masses. Often patients are referred to the CU Cancer Center neuroendocrine “multi-D” clinic after a mass is found during imaging that follows the diagnosis of hormone imbalance. In other patients, a mass is found by accident, often as the byproduct of an MRI for an unrelated accident or condition. Other patients use the clinic for an expert second opinion. And others choose the clinic after disappointing experiences with less specialized care.
“There are only five centers in the country with multi-disciplinary expertise in pituitary tumors. Outside these settings, the average patient gets operated on by a surgeon who has done less than 50 of these surgeries,” says Kevin O. Lillehei, MD, Professor and Ogsbury-Kindt Chair at the CU School of Medicine Department of Neurosurgery and Director of the Neuro-Oncology Program at CU Anschutz University of Colorado Hospital. In contrast, Dr. Lillehai has done more than 1,900 pituitary mass surgeries and continues to perform more than 100 per year.
Surgical expertise is only one component of multi-disciplinary care. In addition to experienced surgeons, the clinic brings together specialized endocrinologists, radiologists, pathologists, medical oncologists, radiation oncologists, clinical researchers, oncology nurse practitioners, oncology social workers, rehabilitation specialists, registered dietitians and genetic counselors to develop and deliver individualized treatment plans for neuroendocrine tumor patients.
“Most patients come for primary treatment, but we are also a second opinion clinic,” says Margaret E. Wierman, MD, professor in the CU School of Medicine Department of Endocrinology, Metabolism and Diabetes, Director of the Pituitary, Adrenal and Neuroendocrine Program and Chief of Endocrinology at the Rocky Mountain Regional Veterans Administration Medical Center.
The team approach means that in a single day, patients can be evaluated by the entire multi-disciplinary panel of experts, leaving in the afternoon with a personalized treatment plan. Once a month, the entire team gets together to review cases including evaluating the pathology used to diagnose the subtype of the condition and even viewing videos of surgeries.
“We do preoperative evaluation, if needed schedule a surgery, then mange hormone status postoperatively. After we’ve treated them, patients often go back to their community endocrinologist for monitoring,” Lillehei says.
Patients at the Neuroendocrine Tumor Center can also choose to take part in cutting-edge research that seeks to generate better understanding of the disease, potentially leading to better treatments for current and future patients. In fact, the center holds the largest bio-bank of pituitary tumors in the country, with more than 700 samples derived from patient tumors. By allowing surgically removed tumor tissue to be stored in this bank, patients contribute to data that CU researchers are mining to discover the underlying genetic characteristics and best treatments for the disease.
“Unlike many other cancers, we don’t yet have immunotherapies and targeted treatments for pituitary tumors,” says Wierman. However, using the neuroendocrine tumor biorepository, Wierman and her team have shown that a gene called MST4 is over-active in the majority of pituitary tumors. The group has even identified a drug called a kinase-inhibitor that turns off MST4. “Now we just need funding for the work in cell lines and mouse models that are needed to lay the groundwork for a clinical trial of this drug,” Wierman says.
Along with treatment and research, the clinic provides education. Especially because neuroendocrine conditions can carry a range of symptoms and implications for long-term hormone management, a patient’s understanding and involvement in their continuing care can be especially important. For example, the group hosts an annual Pituitary Patient Education Day that offers an opportunity for patients, those affected by pituitary conditions and their families to learn about the diagnosis, treatment and continuing care for these conditions.
“I commonly tell patients, now that you carry this diagnosis, you’ll run into people who say, ‘Oh yeah, I had one of those!’ With the right treatment, patients generally do well. But it’s a lifelong disease that requires careful management,” Lillehei says. “People with pituitary tumors should come to a center with a program that specializes in pituitary tumors.”