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How common are neurofibrosarcomas?
Neurofibrosarcoma is considered a soft tissue sarcoma—a cancer that originates in soft tissue, which includes fat, muscles, tendons, nerves, synovial tissue, blood vessels and other fibrous tissue.
What causes neurofibrosarcoma?
The exact cause of neurofibrosarcoma is not entirely understood, however, studies have indicated that genetics may play a role in the formation of all soft tissue sarcomas.
Limited studies have shown a possible link between soft tissue sarcomas and other types of cancer.
Who is at increased risk for developing neurofibrosarcomas?
If your child has neurofibromatosis (which involves alterations in the NF1 gene), he may be at an increased risk for developing neurofibrosarcoma.
These tumors occur in up to 16 percent of people with neurofibromatosis. Neurofibromatosis, also known as Recklinghausen's disease, is a genetic (inherited) condition in which benign fibrous tumors develop inside nerve tissue.
What are the symptoms of neurofibrosarcoma?
Since neurofibrosarcoma affects tissue that is elastic and easily moved around instead of hard and stationary, a tumor may exist for a long time before being discovered, growing large and pushing aside surrounding tissue.
While each child may experience symptoms differently, and symptoms can vary greatly depending on size, location, and spread of tumor, some of the most common include:
The symptoms of neurofibrosarcoma may resemble other conditions or medical problems. Always consult a physician for a diagnosis.
What is the long-term outlook for patients with neurofibrosarcoma?
Your child’s prognosis greatly depends on:
As with any cancer, prognosis and long-term survival can vary greatly. Prompt medical attention and aggressive therapy are important for the best outcome. Because side effects of radiation and chemotherapy, as well as recurrence of the disease, may occur, continuous follow-up care is essential.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”