About
TGCT

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What is TGCT Causes It’s All TGCT Types of TGCT Symptoms Diagnosis

A woman who is trapped by her tgct. She is wrapped up in the tumor.

What is tenosynovial giant cell tumor (TGCT)?

For people who have TGCT, it can be a chronic disease where tumors form in the body's joints resulting in pain, inflammation, and loss of function. It can cause lifelong, permanent damage to the joint and surrounding tissues.

There are 11-50 cases of TGCT per million people annually.

of people living
with TGCT
reported pain

of people living
with TGCT
reported swelling

What causes TGCT?

Research shows that TGCT forms when cells abnormally produce too much of a protein called colony stimulating factor 1 (CSF1), leading to tumor formation. This protein attracts immune cells expressing colony stimulating factor 1 receptor (CSF1R), leading to inflammation and potentially permanent joint damage.

PVNS? GCT‑TS?
It's all TGCT

TGCT used to be referred to as pigmented villonodular synovitis (PVNS) and giant cell tumor of the tendon sheath (GCT‑TS). In 2013, the World Health Organization reclassified GCT‑TS, PVNS and diffuse‑type giant cell tumor all as TGCT.

The various names can be confusing, but when in doubt, just remember PVNS and GCT‑TS are all the same disease: TGCT.

SEE GLOSSARY OF TERMS

A man trapped in his tgct signifying how it has taken over his life.

Types of TGCT

There are two types of TGCT: localized/nodular and diffuse. Localized/nodular TGCT tend to be smaller tumors inside of the joint, while diffuse TGCT tumors are larger and do not have distinct boundaries.

Your experience may be different from other patients, depending on your unique TGCT and tumor location.

Localized/nodular TGCT

More common
Lifetime recurrence rate: up to 15%
Usually single, well-defined tumor, usually nodular
Typically smaller, ~2 cm in size

Often does not cause pain or joint dysfunction

Tumor location:Tends to impact smaller joints like hands, fingers, wrist, foot

silhouette of the human body highlighting areas where tgcts can occur such as wrists, fingers, and feet

Diffuse TGCT

Less common
Lifetime recurrence rate: up to 55%
lll-defined tumors that invade the joint
Large tumors, >5 cm in size
Can extend out of the joint and damage surrounding bone
Tumor location:Tends to impact larger joints like knee, hip, ankle

silhouette of the human body highlighting areas where tgcts can occur such as hips, knees, and ankles

~50

%of
patients

with diffuse TGCT remain symptomatic, even after surgery

Symptoms

People with symptomatic TGCT often suffer from:

Pain
Swelling
Stiffness
Instability

Reduced range of motion

Diagnosis

Getting diagnosed with TGCT can be a journey in itself. Symptoms can mimic those of other diseases and not all doctors have experience with TGCT, which is why it's crucial to consult a doctor that has experience treating TGCT and can lead you to a multi‑disciplinary team of experts.

Find Your Care Team

IT CAN TAKE UP TO

3-4 YEARS

TO GET A TGCT DIAGNOSIS

There are multiple steps to a TGCT diagnosis, which Can include the following:

Physical exam

Clipboard with a patient's medical history

Full analysis of medical history

X-ray

Outline of a person having an MRI of their body

MRI

CT scan

Biopsy

While there are various options for imaging, an MRI is recommended, followed by a biopsy. A definitive diagnosis of TGCT is normally obtained through a biopsy and will help you and your care team understand what treatment option may be best for your specific TGCT.

MRI=magnetic resonance imaging; CT=computerized tomography.