Overview
A keratocystic odontogenic tumor (KCOT), also called an odontogenic keratocyst (OKC), is a type of cyst that grows in the jawbone. Despite being called a 'tumor,' it is not cancerous in most cases — it is a benign (non-cancerous) growth that develops from tissue left over during tooth formation. These cysts can grow slowly but steadily inside the upper or lower jaw, and they have a well-known tendency to come back after treatment. KCOTs can cause the jawbone to expand, leading to swelling, pain, or a feeling of pressure in the face or mouth. In some cases, they push on nearby teeth, causing them to shift or become loose. Smaller cysts may cause no symptoms at all and are only found during a routine dental X-ray. If left untreated, they can grow large enough to weaken the jawbone and increase the risk of fracture. Treatment usually involves surgery to remove the cyst. Because these cysts have a high chance of returning — sometimes years later — regular follow-up imaging is very important. In people who have multiple KCOTs, especially at a young age, doctors will often check for a related genetic condition called Gorlin syndrome (also known as basal cell nevus syndrome). With proper monitoring and treatment, most people with KCOT do well, though lifelong dental and surgical follow-up is often needed.
Also known as:
Key symptoms:
Swelling or puffiness of the jaw or cheekPain or tenderness in the jawTeeth shifting or becoming loose without an obvious reasonA feeling of pressure or fullness inside the mouth or jawDifficulty opening the mouth fullyNumbness or tingling in the lower lip or chin (if the cyst presses on a nerve)A lump or bump felt along the gumlineDischarge or a bad taste in the mouth if the cyst becomes infectedAccidental discovery on a dental X-ray with no symptoms at allRepeated jaw cysts appearing over time (especially in Gorlin syndrome)
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
2 eventsSemmelweis University
University of Belgrade — PHASE4
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Keratocystic odontogenic tumor.
2 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 Keratocystic odontogenic tumor.
Community
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Start the conversation →Latest news about Keratocystic odontogenic tumor
Disease timeline:
New recruiting trial: Patient Specific Implants (PSIs) for the Decompression of Odontogenic Cysts
A new clinical trial is recruiting patients for Keratocystic odontogenic tumor
Caregiver Resources
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Questions for your doctor
Bring these to your next appointment
- Q1.How large is my cyst, and which surgical approach do you recommend for my specific case?,What is the chance my cyst will come back, and how will we monitor for that?,Should I be tested for Gorlin syndrome, and should my family members be tested too?,How long will recovery from surgery take, and what restrictions will I have on eating or activity?,How often will I need follow-up X-rays or scans after treatment?,Are there any medications or treatments that could reduce the risk of the cyst returning?,If I have Gorlin syndrome, what other health screenings do I need?
Common questions about Keratocystic odontogenic tumor
What is Keratocystic odontogenic tumor?
A keratocystic odontogenic tumor (KCOT), also called an odontogenic keratocyst (OKC), is a type of cyst that grows in the jawbone. Despite being called a 'tumor,' it is not cancerous in most cases — it is a benign (non-cancerous) growth that develops from tissue left over during tooth formation. These cysts can grow slowly but steadily inside the upper or lower jaw, and they have a well-known tendency to come back after treatment. KCOTs can cause the jawbone to expand, leading to swelling, pain, or a feeling of pressure in the face or mouth. In some cases, they push on nearby teeth, causing t
Are there clinical trials for Keratocystic odontogenic tumor?
Yes — 2 recruiting clinical trials are currently listed for Keratocystic odontogenic tumor on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Keratocystic odontogenic tumor?
19 specialists and care centers treating Keratocystic odontogenic tumor are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.