Living with Malignant peripheral nerve sheath tumor
A tumor that grows in the lining around nerves and often first appears as a growing lump.
Understanding Malignant peripheral nerve sheath tumor
The first symptom is often a lump that grows and sometimes causes pain or tingling. It is considered aggressive because it can grow back after surgery and can spread to other parts of the body, most commonly the lung. It can happen at a variety of ages.
Signs & symptoms
GARD doesn't list a separate symptom list, but its summary describes these:
- A lump or mass that gets larger
- Pain
- Tingling sensation
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Sarcoma Foundation of America may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Sarcoma Foundation of America
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Sarcoma Foundation of America and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
About 25-50% of MPNSTs are linked with a genetic condition called neurofibromatosis type 1. GARD doesn't describe other causes.
Also known as: malig. periph. nerve sheath tum.; malignant neoplasm of peripheral nerve sheath; malignant neoplasm of the peripheral nerve sheath; malignant neurilemmoma; malignant neurilemoma; malignant neurofibroma
Patient organizations
- Sarcoma Foundation of AmericaMalignant peripheral nerve sheath tumor · United States
- American Cancer SocietyMalignant peripheral nerve sheath tumor · United States
You are more than your diagnosis
Perspectives from people navigating life with Malignant peripheral nerve sheath tumor.
Explore research for Malignant peripheral nerve sheath tumor
Explore actively recruiting Malignant peripheral nerve sheath tumor studies with HealthSpark.
Find actively recruiting studies for Malignant peripheral nerve sheath tumor with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Malignant peripheral nerve sheath tumor studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Malignant peripheral nerve sheath tumor
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Malignant peripheral nerve sheath tumor experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.