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Vanderbilt offers family care for hereditary cancer syndromes

April 29, 2022

With Tennessee’s only Comprehensive Cancer Center designated by the National Cancer Institute to treat people of all ages, Vanderbilt University Medical Center (VUMC) offers families a seamless care experience.

The wealth of expertise at VUMC provides access to medical specialties besides hematology/ oncology and a one-stop option when families are confronted with hereditary cancer syndromes. One example is von Hippel-Lindau disease (VHL), a genetic condition characterized by tumors in certain areas of the body that can be benign or cancerous.

Vanderbilt is an international leader in VHL care. VUMC was one of the clinical trial sites that led the U.S. Food and Drug Administration to approve the first therapy for VHL-associated cancers in 2021. Three VUMC physician scientists serve on the Clinical Advisory Council for the VHL Alliance, and one of them also serves on its Research Council. One of those VUMC physicians led the most recent revision initiative in 2020 for VHL screening guidelines.

Families learn about the disease when either a parent or child is diagnosed.

“The nice thing about Vanderbilt is we have it all under one roof, and the entire family gets taken care of here,” said Debra Friedman, MD, MS, the E. Bronson Ingram Chair in Pediatric Oncology and director of Pediatric Hematology and Oncology.

People who have VHL disease may experience tumors in up to 10 areas of the body, including the brain, eyes, kidney and adrenal glands. Although the tumors are benign in many cases, they can also be very serious. In addition, cancerous lesions can occur, most commonly in the kidney, as patients advance into adulthood.

The multispecialty VHL care team at Vanderbilt covers the lifespan of the patient. It includes Friedman; Anthony Daniels, MD, MSc, assistant professor of Ophthalmology and Visual Sciences and assistant professor of Radiation Oncology, who chaired the committee responsible for the updated surveillance guidelines; Tuya Pal, MD, Ingram Professor of Cancer Research, professor of Medicine and professor of Pediatrics, and W. Kimryn Rathmell, PhD, MD, Hugh Jackson Morgan Professor of Medicine, professor of Medicine, professor of Biochemistry and chair of the Department of Medicine.