Overview
Adamantinoma is a very rare type of bone cancer that almost always develops in the long bones of the legs, most often in the shinbone (tibia). It can also occur in the fibula (the smaller bone next to the shinbone) and, rarely, in other bones. The tumor grows slowly and tends to stay in the bone for a long time before spreading, which is why it is sometimes called a 'low-grade' malignant tumor. Despite its slow growth, adamantinoma is a true cancer and can spread to other parts of the body, including the lungs and lymph nodes, if not treated. The most common symptoms are pain, swelling, and a firm lump along the shinbone. Many people notice these symptoms for months or even years before getting a diagnosis, because the tumor grows so slowly. The disease most often affects teenagers and young adults, though it can appear at any age. The main treatment is surgery to remove the tumor, usually with a wide margin of healthy tissue around it. In some cases, the affected bone segment is replaced with a bone graft or a metal implant. Radiation and chemotherapy are generally not very effective for this tumor, so surgery is the cornerstone of care. With complete surgical removal, many patients do well, but long-term follow-up is essential because the tumor can come back years later.
Also known as:
Key symptoms:
Pain in the shinbone or lower legSwelling or a lump along the shinboneA firm, hard mass that can be felt under the skinBowing or curving of the lower leg boneTenderness when pressing on the affected areaGradual worsening of leg pain over months or yearsDifficulty walking or bearing weight on the legRarely, a fracture through the weakened boneShortness of breath or cough if cancer has spread to the lungs
Clinical phenotype terms (3)— 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
FDA & Trial Timeline
5 eventsNanfang Hospital, Southern Medical University — PHASE1, PHASE2
Parabilis Medicines, Inc. — PHASE1, PHASE2
Nationwide Children's Hospital — PHASE2
Nationwide Children's Hospital — PHASE2
University of Colorado, Denver — EARLY_PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Adamantinoma.
4 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Adamantinoma.
Community
No community posts yet. Be the first to share your experience with Adamantinoma.
Start the conversation →Latest news about Adamantinoma
Disease timeline:
New recruiting trial: Proton Therapy Research Infrastructure- ProTRAIT- Neuro-oncology
A new clinical trial is recruiting patients for Adamantinoma
New recruiting trial: Treatment of BRAF ( B-Rapidly Accelerated Fibrosarcoma) Mutated Papillary Craniopharyngioma
A new clinical trial is recruiting patients for Adamantinoma
New recruiting trial: Safety and Efficacy of Anlotinib in the Treatment of Recurrent Craniopharyngioma
A new clinical trial is recruiting patients for Adamantinoma
New recruiting trial: Virtual Lesion Segmentation and Mandibular Ameloblastoma Radiographic Safety Margin
A new clinical trial is recruiting patients for Adamantinoma
New recruiting trial: The Impact of Endoscopic Endonasal Skull Base Surgery on Olfaction
A new clinical trial is recruiting patients for Adamantinoma
New recruiting trial: MEKTOVI® for the Treatment of Pediatric Adamantinomatous Craniopharyngioma
A new clinical trial is recruiting patients for Adamantinoma
New recruiting trial: ACTEMRA® for the Treatment of Pediatric Adamantinomatous Craniopharyngioma
A new clinical trial is recruiting patients for Adamantinoma
New recruiting trial: Craniopharyngioma and Pregnancies
A new clinical trial is recruiting patients for Adamantinoma
New recruiting trial: Tovorafenib for Treatment of Craniopharyngioma in Children and Young Adults
A new clinical trial is recruiting patients for Adamantinoma
New recruiting trial: FOG-001 in Locally Advanced or Metastatic Solid Tumors
A new clinical trial is recruiting patients for Adamantinoma
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.Has the tumor spread beyond the bone, and what tests will you use to find out?,What type of surgery do you recommend, and will I need a bone graft or metal implant?,What are the chances the tumor will come back, and how will we monitor for that?,Will I need chemotherapy or radiation, and why or why not?,How long will my recovery take, and what will physical therapy involve?,Are there any clinical trials I should consider for this type of tumor?,How often will I need follow-up scans, and for how many years?
Common questions about Adamantinoma
What is Adamantinoma?
Adamantinoma is a very rare type of bone cancer that almost always develops in the long bones of the legs, most often in the shinbone (tibia). It can also occur in the fibula (the smaller bone next to the shinbone) and, rarely, in other bones. The tumor grows slowly and tends to stay in the bone for a long time before spreading, which is why it is sometimes called a 'low-grade' malignant tumor. Despite its slow growth, adamantinoma is a true cancer and can spread to other parts of the body, including the lungs and lymph nodes, if not treated. The most common symptoms are pain, swelling, and a
How is Adamantinoma inherited?
Adamantinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Adamantinoma?
Yes — 4 recruiting clinical trials are currently listed for Adamantinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Adamantinoma?
25 specialists and care centers treating Adamantinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.