Roswell Park establishes Neurofibromatosis Clinic

Roswell Park Comprehensive Cancer Center has 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. NF also puts individuals at an elevated risk for other types of cancers, including breast and gastrointestinal stromal tumors. 

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; and
• 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,” Lindsay Lipinski, a neurosurgeon at Roswell Park, said in a statement.