Overview
Pleomorphic rhabdomyosarcoma is a very rare and aggressive type of soft tissue cancer (sarcoma) that develops from cells related to skeletal muscle. Unlike other forms of rhabdomyosarcoma that are more common in children, pleomorphic rhabdomyosarcoma almost exclusively affects adults, typically those over 45 years of age. It is the rarest subtype of rhabdomyosarcoma. This cancer most often appears as a rapidly growing mass in the deep soft tissues of the arms or legs (extremities), though it can occur in other parts of the body. The tumor cells look highly abnormal and varied under the microscope, which is where the name 'pleomorphic' (meaning many shapes) comes from. Patients may notice a painless or painful lump that grows quickly, swelling in the affected area, and sometimes difficulty moving the nearby limb. Because pleomorphic rhabdomyosarcoma is aggressive, it can spread (metastasize) to the lungs, bones, and other organs. Treatment typically involves a combination of surgery to remove the tumor, radiation therapy, and chemotherapy. Despite treatment, this cancer has a relatively poor prognosis compared to other rhabdomyosarcoma subtypes, and outcomes depend heavily on whether the tumor can be completely removed surgically and whether it has already spread at the time of diagnosis.
Key symptoms:
Rapidly growing lump or mass in the arm or legPainless or painful swelling in soft tissueDifficulty moving the affected limbFirmness or hardness of the massFatigue and general tirednessUnexplained weight lossPain at the tumor siteSwelling or enlargement of the affected areaNumbness or tingling if nerves are compressedShortness of breath if cancer spreads to the lungsBone pain if cancer spreads to bones
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Pleomorphic rhabdomyosarcoma.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Pleomorphic rhabdomyosarcoma.
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Caregiver Resources
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Family & Caregiver Grants
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Social Security Disability
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Questions for your doctor
Bring these to your next appointment
- Q1.What is the stage of my cancer, and has it spread beyond the original site?,Can the tumor be completely removed with surgery, and what are the risks of the operation?,What chemotherapy and radiation options are recommended for my specific case?,Are there any clinical trials available that I might be eligible for?,What are the expected side effects of treatment, and how can they be managed?,How often will I need follow-up scans and appointments after treatment?,Should I be referred to a specialized sarcoma center for a second opinion?
Common questions about Pleomorphic rhabdomyosarcoma
What is Pleomorphic rhabdomyosarcoma?
Pleomorphic rhabdomyosarcoma is a very rare and aggressive type of soft tissue cancer (sarcoma) that develops from cells related to skeletal muscle. Unlike other forms of rhabdomyosarcoma that are more common in children, pleomorphic rhabdomyosarcoma almost exclusively affects adults, typically those over 45 years of age. It is the rarest subtype of rhabdomyosarcoma. This cancer most often appears as a rapidly growing mass in the deep soft tissues of the arms or legs (extremities), though it can occur in other parts of the body. The tumor cells look highly abnormal and varied under the micros
How is Pleomorphic rhabdomyosarcoma inherited?
Pleomorphic rhabdomyosarcoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Pleomorphic rhabdomyosarcoma typically begin?
Typical onset of Pleomorphic rhabdomyosarcoma is adult. Age of onset can vary across affected individuals.
Which specialists treat Pleomorphic rhabdomyosarcoma?
14 specialists and care centers treating Pleomorphic rhabdomyosarcoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.