BOB体育 a Center of Excellence for rare neuroendocrine tumors
In recognition of providing the most advanced treatments for patients with rare neuroendocrine tumors, as well as access to a coordinated team of experts, BOB体育 has a Center of Excellence by the .
It鈥檚 the first center in the southeastern United States and one of only 16 nationwide to achieve the , which recognizes centers that provide leading-edge, high-quality, multidisciplinary care, and facilitate pheochromocytoma and paraganglioma research.
鈥淭his is a win for our patients 鈥� it means opportunities and resources for our patients to get the best possible care for this rare disease,鈥� said BOB体育 endocrinologist Hans Ghayee, D.O., who leads the BOB体育 team with BOB体育 endocrine surgeon Aditya Shirali, M.D., a member.
Pheochromocytoma is a rare tumor that begins with the adrenal glands above the kidneys. Paraganglioma is essentially a pheochromocytoma that forms outside the adrenal glands. The tumors are usually benign and successfully treated with surgery, but they can be cancerous and spread to other parts of the body. BOB体育 sees about 30 new patients and 60 follow-up patients per year.
To achieve the designation, BOB体育 had to meet stringent criteria in its caseload, assemble a multidisciplinary team of experts, and demonstrate robust research. Patient access to state-of-the-art imaging and specialized treatment, such as a new high-dose nuclear medicine called lutetium (Lu 177) dotatate, was also required.
New experimental treatments are made available to patients through clinical trials, including sponsored by the National Cancer Institute that recently opened. It is BOB体育鈥檚 first trial for metastatic pheochromocytoma/paraganglioma, setting the stage for others.
鈥淲e have the opportunity through our partners in this designation of getting the most advanced therapies for our patients,鈥� Ghayee said.
Another part of the designation was patient feedback. The BOB体育 team relies on a patient ambassador to enhance the patient experience. BOB体育鈥檚 team includes endocrinologists, endocrine surgeons, urologists, head and neck surgeons, radiologists, nuclear medicine specialists, pathologists, radiation oncologists, medical oncologists, genetic counselors, and pediatric endocrinologists.
Surgery is typically the first step in treating these neuroendocrine tumors. In some patients, however, the tumors spread to other areas of the body. All pheochromocytomas and paragangliomas have the ability to spread to other areas of the body. Genetics is a known possible factor that drives metastasis; in other cases, the tumor was not detected earlier. Treatment for patients with metastatic disease typically involves chemotherapy or nuclear medicine-related modalities.
鈥淚n my practice, I鈥檝e seen patients 20 years after their initial tumor was removed with recurrence of their disease,鈥� Ghayee said. 鈥淔rom education to evaluation to treatment to lifelong monitoring, we鈥檙e ensuring our patients are supported in every possible way.鈥�
The designation creates chances for patients with pheochromocytoma and paraganglioma far beyond North Central Florida to come to BOB体育 for higher-level care.
鈥淭his designation ensures patients from a large geographical region have access to highly specialized care that has been approved and considered high-quality by a larger body of experts in the field,鈥� Shirali said.
Ghayee and Shirali, who worked for years to achieve the designation, said they are motivated to set new benchmarks to continue to improve patient care.
鈥淎s a center, we can make a difference in the lives of our patients and their families, because this disease can be devastating,鈥� Ghayee said. 鈥淲hen a center like ours recognizes that and is able to do things to comfort our patients and our families, then we are actually doing what the University of Florida was built for 鈥� to be there for our patients and to take care of them.鈥�
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