Overview
Giant cell tumor of bone (GCT of bone) is a usually benign but locally aggressive bone tumor. It most often develops near the ends of long bones, especially around the knee (the lower end of the thighbone or the upper end of the shinbone), but it can also occur in the wrist, hip, shoulder, or spine. The tumor is made up of a mix of cells, including distinctive large "giant cells" that have many nuclei. These giant cells are responsible for breaking down bone tissue, which is why the tumor can weaken the bone and cause pain, swelling, and sometimes fractures. Giant cell tumor of bone typically affects young adults between the ages of 20 and 40. It is slightly more common in women than men. While most cases are benign, the tumor tends to come back after treatment, and in rare cases (about 1-5%), it can spread to the lungs. An even rarer form, called malignant giant cell tumor, can behave like a cancer. Treatment usually involves surgery to remove the tumor while preserving as much of the bone and joint function as possible. A technique called curettage (scraping out the tumor) combined with bone cement or bone grafting is commonly used. For tumors that are difficult to remove surgically or that come back, a medication called denosumab (brand name Xgeva) has been approved and works by blocking the cells that destroy bone. Radiation therapy may also be considered in certain situations. With proper treatment, the outlook for most patients is good, though long-term follow-up is important to watch for recurrence.
Also known as:
Key symptoms:
Pain near a joint, especially the kneeSwelling near the end of a boneLimited movement in the nearby jointA noticeable lump or mass near a jointBone fracture from minor injury (pathological fracture)Stiffness in the affected jointTenderness when pressing on the areaWeakness in the affected limbDifficulty walking if the leg is affectedWrist pain and reduced grip strength if the wrist is involved
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
9 eventsShanghai Jiao Tong University Affiliated Sixth People's Hospital — PHASE4
Tang Xiaodong — PHASE1, PHASE2
Peking University People's Hospital — NA
Amgen — PHASE4
Shanghai JMT-Bio Inc. — PHASE3
Second Affiliated Hospital, School of Medicine, Zhejiang University — PHASE2
St. Louis University — PHASE3
XGEVA: FDA approved
Treatment of adults and skeletally mature adolescents with giant cell tumor of bone that is unresectable or where surgical resection is likely to result in severe morbidity.
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableXGEVA
Treatment of adults and skeletally mature adolescents with giant cell tumor of bone that is unresectable or where surgical resection is likely to result in severe morbidity.
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
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to Giant cell tumor of bone.
Community
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Start the conversation →Latest news about Giant cell tumor of bone
Disease timeline:
New recruiting trial: Efficacy of ICG-based NIR Imaging in Intralesional Curettage of Giant Cell Tumors of Bone in Limbs: a Prospective, Single-center, Single-arm, Open Study
A new clinical trial is recruiting patients for Giant cell tumor of bone
New recruiting trial: PROMIS and Mobility Evaluation in Sarcoma Patients
A new clinical trial is recruiting patients for Giant cell tumor of bone
New recruiting trial: Narlumosbartmab Combined With Neoadjuvant Chemotherapy in Bone-derived Malignancies With Osteolytic Lesions and Multinucleated Giant Cells
A new clinical trial is recruiting patients for Giant cell tumor of bone
New recruiting trial: Zoledronic Acid-loaded Bone Cement as a Local Adjuvant Therapy for Giant Cell Bone Tumor After Intralesional Curettage
A new clinical trial is recruiting patients for Giant cell tumor of bone
New recruiting trial: Accuracy of Indocyanine Green (ICG) Fluorescence Imaging in Giant Cell Tumor of Bone Surgery
A new clinical trial is recruiting patients for Giant cell tumor of bone
New recruiting trial: Local Bisphosphonate Effect on Recurrence Rate in Extremity Giant Cell Tumor of Bone
A new clinical trial is recruiting patients for Giant cell tumor of bone
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 is the exact location and size of my tumor, and does it affect the joint?,What surgical approach do you recommend, and what are the risks of recurrence with that approach?,Would denosumab be helpful in my case, either before or instead of surgery?,How often will I need follow-up imaging, and for how long?,What are the chances that my tumor could come back or spread?,What physical limitations should I expect after treatment, and will I need physical therapy?,Are there any clinical trials available for giant cell tumor of bone that I should consider?
Common questions about Giant cell tumor of bone
What is Giant cell tumor of bone?
Giant cell tumor of bone (GCT of bone) is a usually benign but locally aggressive bone tumor. It most often develops near the ends of long bones, especially around the knee (the lower end of the thighbone or the upper end of the shinbone), but it can also occur in the wrist, hip, shoulder, or spine. The tumor is made up of a mix of cells, including distinctive large "giant cells" that have many nuclei. These giant cells are responsible for breaking down bone tissue, which is why the tumor can weaken the bone and cause pain, swelling, and sometimes fractures. Giant cell tumor of bone typically
How is Giant cell tumor of bone inherited?
Giant cell tumor of bone follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Giant cell tumor of bone typically begin?
Typical onset of Giant cell tumor of bone is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Giant cell tumor of bone?
Yes — 6 recruiting clinical trials are currently listed for Giant cell tumor of bone on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Giant cell tumor of bone?
25 specialists and care centers treating Giant cell tumor of bone are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Giant cell tumor of bone?
1 patient support program are currently tracked on UniteRare for Giant cell tumor of bone. See the treatments and support programs sections for copay assistance, eligibility, and contact details.