Neurofibromatosis Clinic at Roswell Park Brings Experts Together to Tackle Complex Genetic Condition

BUFFALO, N.Y. — Considered one of the more common genetic disorders, neurofibromatosis (NF) is a complex condition that requires patients to seek care from experts across numerous specialties. Recognizing the extensive specialized care patients with this condition require to monitor and address their symptoms, and the lack of understanding of this condition in the community, doctors at Roswell Park Comprehensive Cancer Center have launched a dedicated neurofibromatosis care program.

While common among genetic conditions, neurofibromatosis is still relatively rare. It affects the nervous system as tumors that can manifest anywhere in the body. Most NF tumors are noncancerous but can cause issues like pain, scoliosis, vision and hearing loss and skin growths. Some nerve tumors, however, can become malignant, including those found along the spine, which can develop into a type of sarcoma known as malignant peripheral nerve sheath tumors (MPNSTs). NF also puts individuals at an elevated risk for other types of cancers, including breast and gastrointestinal stromal tumors (GISTs).

The Neurofibromatosis Clinic provides a multidisciplinary, coordinated approach to patient care, uniting the skill and expertise of providers in many different areas:

• Experienced diagnostic radiologists to provide prompt, accurate diagnosis
• Comprehensive clinical care from medical oncologists, surgical oncologists, neurosurgeons and neuro-oncologists
• Clinical geneticists to confirm diagnosis, plan treatment and guide testing of other family members
• Plastic and reconstructive surgeons to offer options for tumor removal and improved appearance
• Supportive care from specialists in pain management, social work and young adult health
• Cancer screening and surveillance for ongoing monitoring

The clinic is one of the few centers in the U.S. to provide coordinated, comprehensive care for adults with NF. Because the condition is inherited, Roswell Park offers Clinical Genetics counseling and testing, often extending services to family members in what’s known as cascade genetic testing.

“Studies have shown that there is a benefit to neurofibromatosis patients who receive care through a specialty clinic like the one we’ve established at Roswell Park,” says Lindsay Lipinski, MD, FAANS, a neurosurgeon at Roswell Park. “We hope that our continued mission of offering comprehensive clinical care will give these individuals prompt and easy access to all the providers they need under one roof.”

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NOTE: See Roswell Park’s Cancer Talk blog to learn more about neurofibromatosis and hear from Shamika, who was diagnosed with NF in her early 30s.

Roswell Park Comprehensive Cancer Center is a community united by the drive to eliminate cancer’s grip on humanity by unlocking its secrets through personalized approaches and unleashing the healing power of hope. Founded by Dr. Roswell Park in 1898, it is the only National Cancer Institute-designated comprehensive cancer center in Upstate New York. Learn more at www.roswellpark.org, or contact us at 1-800-ROSWELL (1-800-767-9355) or ASKRoswell@RoswellPark.org.