Overview
Rare soft tissue tumors are a broad group of uncommon growths that develop in the soft tissues of the body. Soft tissues include muscles, fat, blood vessels, nerves, tendons, and the tissue that surrounds joints and organs. These tumors can appear almost anywhere in the body, but they are most commonly found in the arms, legs, trunk, or abdomen. Some of these tumors are benign (not cancerous), while others are malignant (cancerous), known as soft tissue sarcomas. Because this category covers many different tumor types, symptoms can vary widely depending on the location and size of the growth. Common signs include a painless or painful lump or swelling that grows over time, discomfort or pressure in the affected area, and sometimes difficulty moving a limb if the tumor presses on nearby nerves or muscles. Many patients first notice a lump that does not go away or that slowly gets bigger. Because these tumors are rare, they can be difficult to diagnose and may initially be mistaken for more common conditions like cysts or benign lumps. Treatment depends on the specific type of soft tissue tumor, its location, size, and whether it has spread. Options may include surgery to remove the tumor, radiation therapy, chemotherapy, or targeted drug therapies. A multidisciplinary team of specialists is usually involved in care. Early and accurate diagnosis is important because treatment approaches and outcomes differ greatly between the many subtypes of soft tissue tumors. Research continues to improve understanding of these tumors and develop better treatments.
Also known as:
Key symptoms:
A lump or swelling under the skinA mass that grows over weeks or monthsPain or tenderness at the site of the tumorDifficulty moving a limb or joint near the tumorNumbness or tingling if the tumor presses on a nerveAbdominal pain or bloating if the tumor is in the bellyUnexplained weight lossFatigue or feeling unusually tiredSwelling in an arm or legFeeling of fullness or pressure in the affected areaSkin changes over the lumpBowel or bladder problems if the tumor is in the pelvis
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Rare soft tissue tumor.
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Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
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 Rare soft tissue tumor.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What specific type of soft tissue tumor do I have, and is it benign or malignant?,What stage is my tumor, and has it spread to other parts of my body?,What are my treatment options, and what do you recommend for my specific case?,Should I get a second opinion at a specialized sarcoma center?,Are there any clinical trials available for my type of tumor?,What are the possible side effects of the recommended treatment, and how can they be managed?,Should I or my family members have genetic testing for hereditary cancer syndromes?
Common questions about Rare soft tissue tumor
What is Rare soft tissue tumor?
Rare soft tissue tumors are a broad group of uncommon growths that develop in the soft tissues of the body. Soft tissues include muscles, fat, blood vessels, nerves, tendons, and the tissue that surrounds joints and organs. These tumors can appear almost anywhere in the body, but they are most commonly found in the arms, legs, trunk, or abdomen. Some of these tumors are benign (not cancerous), while others are malignant (cancerous), known as soft tissue sarcomas. Because this category covers many different tumor types, symptoms can vary widely depending on the location and size of the growth.
Which specialists treat Rare soft tissue tumor?
25 specialists and care centers treating Rare soft tissue tumor are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.