Living with Tenosynovial giant cell tumor, diffuse type
A noncancerous growth in the lining of a joint that can cause pain, swelling, and stiffness, most often in the knee.
Understanding Tenosynovial giant cell tumor, diffuse type
The diffuse form involves the entire joint lining. A local form involves only the tendons or one area of the joint. The knee is most often affected, but it can also happen in the hip, shoulder, elbow, ankle, wrist, and rarely the jaw. It can start anywhere from childhood to adulthood. In some cases the normal joint structure can be damaged.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Joint pain (arthralgia)
- Joint swelling
- Joint stiffness
- Limited joint movement
- Bleeding inside a joint (joint hemorrhage)
- Breakdown of bone (osteolysis)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
TGCT Support may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists)
- Expert care
- Expert lists: TGCT Support
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with TGCT Support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the cause of this condition is unknown.
Also known as: diffuse giant cell neoplasm of tendon sheath; diffuse giant cell neoplasm of tenosynovium; diffuse giant cell neoplasm of the tenosynovium; diffuse giant cell tumor of tendon sheath; diffuse giant cell tumor of tenosynovium; diffuse giant cell tumor of the tenosynovium
Patient organizations
- TGCT SupportTenosynovial giant cell tumor, diffuse type · United States
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Perspectives from people navigating life with Tenosynovial giant cell tumor, diffuse type.
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