What is neurofibrosarcoma?

Neurofibrosarcoma, also known as peripheral nerve sheath tumor, is a malignant tumor that develops in the cells surrounding the peripheral nerves.  

  • Peripheral nerves receive messages from the central nervous system (brain and spinal cord), which leads them to stimulate voluntary movement.
  • Neurofibrosarcoma is usually found in the arms and legs and can spread extensively along nerve tissue.
  • It usually doesn’t metastasize (spread) to other parts of the body, although it sometimes spreads to the lungs.
  • Neurofibrosarcoma affects mostly young and middle-age adults.
  • It can sometimes arise in people with neurofibromatosis (NF1).

How Dana-Farber/Boston Children’s approaches neurofibrosarcoma

We understand that you may have a lot of questions when your child is diagnosed with neurofibrosarcoma. Is it dangerous? Will it affect my child long-term? What do we do next? Our experts can explain your child’s condition fully. If you have further questions during your hospital stay, we have a resource room that will help answer your questions.

Our multidisciplinary Bone and Soft Tissue Program team conducts in-depth discussions of each case and personalizes treatment plans for every patient. Your child will receive integrated care from a team that includes the following specialists:

  • pediatric oncologists, surgical oncologists and radiation oncologists
  • pediatric experts from every medical subspecialty, such as orthopedics, ophthalmology, physical therapy and radiology, among others  
  • highly skilled and experienced pediatric oncology nurses
  • child Life specialists, psychologists, social workers and resource specialists who provide supportive care before, during and after treatment

In addition, our cancer center offers the following services:

  • Expert diagnosis by pathologists using advanced molecular diagnostic testing to identify your child’s type of tumor. Knowing the molecular composition of a tumor helps predict which treatments are more likely to work.
  • Expert surgical care from experienced pediatric surgeons and orthopaedic surgeons, several of whom developed approaches used at centers across the country.  
  • Access to unique Phase I clinical trials, from our own investigators, and from the Children’s Oncology Group.
  • Support services to address all of your child and family’s needs.

A weekly survivorship clinic, which set the national standard for childhood cancer survivorship care. This weekly clinic offers ongoing care to manage late effects caused by your child’s cancer or the treatment they received.