Diagnosis

To diagnose a neurofibroma, your healthcare professional gives you a physical exam and reviews your medical history.

You may need an imaging test such as a CT or MRI scan. Imaging can help find the location of the tumor. CT and MRI also can find very small tumors and show what tissues are affected. A PET scan can reveal whether the tumor is cancer. A tumor that's not cancerous is known as benign.

A sample of the neurofibroma may be taken and tested for diagnosis. This is known as a biopsy. A biopsy also may be needed if surgery is being considered as a treatment.

Treatment

Neurofibroma treatment isn't needed for a single tumor with no symptoms. Healthcare professionals usually monitor the neurofibroma. Surgery may be needed if the tumor is causing symptoms or for cosmetic reasons. Treatment may include:

  • Monitoring. Your healthcare professional may recommend observation of a small neurofibroma that causes no symptoms. Monitoring also may be recommended if the neurofibroma causes symptoms but is located in an area that makes it hard to remove. Observation includes regular checkups and imaging tests to see if the tumor is growing.
  • Medicine to treat a plexiform neurofibroma. Selumetinib (Koselugo) has been approved to treat a plexiform neurofibroma in children with neurofibromatosis type 1. A plexiform neurofibroma grows on many nerves. The medicine can shrink the tumor.
  • Surgery to remove the tumor. Symptoms can be relieved by removing all or part of a neurofibroma that's pressing on nearby tissue or damaging organs. The type of surgery depends on the location and size of the tumor. The type of surgery also depends on whether the neurofibroma is intertwined with more than one nerve. The goal of surgery is to remove as much of the tumor as possible without causing further nerve damage.

    After surgery, you may need physical rehabilitation. Physical therapists and occupational therapists can guide you through exercises that keep your muscles and joints active. Rehabilitation also helps prevent stiffness and restore your function and feeling.

  • Clinical trials. You may qualify for a clinical trial testing an experimental treatment.