Overview
Mast cell sarcoma is an extremely rare and aggressive form of cancer that starts in mast cells — a type of immune cell normally found in tissues throughout the body. Mast cells play an important role in allergic reactions and immune defense. In mast cell sarcoma, these cells become cancerous and form solid tumors that can appear in many different parts of the body, including the skin, bone, lymph nodes, liver, spleen, and other organs. Unlike the more common and slower-growing forms of mast cell disease, mast cell sarcoma behaves very aggressively and tends to spread quickly. People with this disease may experience a wide range of symptoms depending on where the tumor is located. Common problems include swelling or lumps under the skin, bone pain, fatigue, fever, and symptoms caused by the release of chemicals from mast cells — such as flushing, hives, low blood pressure, and stomach cramps. These chemical releases, called mast cell mediator symptoms, can sometimes cause life-threatening allergic-like reactions. Treatment is very challenging because mast cell sarcoma is so rare that large clinical trials are difficult to conduct. Doctors typically use chemotherapy, radiation therapy, and sometimes targeted drugs. Stem cell transplant has been used in some cases. There is no single standard treatment that works for everyone, and the disease often does not respond well to therapy. Research is ongoing, and some patients may benefit from newer targeted treatments or clinical trials.
Key symptoms:
A lump or swelling that grows quickly under the skin or in an organBone pain or tendernessExtreme tiredness and fatigueFever and night sweatsUnexplained weight lossSkin flushing or rednessHives or itchy skinLow blood pressure or dizzinessStomach pain, nausea, or diarrheaEnlarged lymph nodesEnlarged liver or spleen causing abdominal fullnessDifficulty breathing in some casesAnemia (low red blood cell count) causing paleness and weakness
Clinical phenotype terms (9)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Mast cell sarcoma.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Mast cell sarcoma at this time.
New trials open frequently. Follow this disease to get notified.
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 Mast cell sarcoma.
Community
No community posts yet. Be the first to share your experience with Mast cell sarcoma.
Start the conversation →Latest news about Mast cell sarcoma
No recent news articles for Mast cell sarcoma.
Follow this condition to be notified when news becomes available.
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 type of KIT mutation does my tumor have, and does that affect which treatments might work best for me?,Am I a candidate for a stem cell transplant, and what would that process involve?,Are there any clinical trials for mast cell sarcoma that I might be eligible for?,How will we know if the treatment is working, and what is the plan if it stops working?,What medications or triggers should I avoid to prevent mast cell reactions?,Should I carry an epinephrine auto-injector, and when should I use it?,Can you refer me to a center that specializes in mast cell diseases for a second opinion?
Common questions about Mast cell sarcoma
What is Mast cell sarcoma?
Mast cell sarcoma is an extremely rare and aggressive form of cancer that starts in mast cells — a type of immune cell normally found in tissues throughout the body. Mast cells play an important role in allergic reactions and immune defense. In mast cell sarcoma, these cells become cancerous and form solid tumors that can appear in many different parts of the body, including the skin, bone, lymph nodes, liver, spleen, and other organs. Unlike the more common and slower-growing forms of mast cell disease, mast cell sarcoma behaves very aggressively and tends to spread quickly. People with this
How is Mast cell sarcoma inherited?
Mast cell sarcoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Mast cell sarcoma?
9 specialists and care centers treating Mast cell sarcoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.