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Answer a question about your experience with TGCT.

Are you currently speaking with a doctor about TGCT
(also known as PVNS or GCT-TS)?

See how others responded: X

40% Yes, I am speaking
with a doctor
about TGCT.
15% No, I am not speaking
with a doctor
about TGCT.
30% No, I am not sure
if I have TGCT.
15% No, I am a caregiver
/family member.

Thank you.

Many cases of TGCT can be resolved with just one surgery. But people with
diffuse TGCT or TGCT that keeps coming back may benefit from working with a
team of healthcare specialists. These experts can help you on your journey with TGCT.
Click here to learn more about the doctors who may be involved in your treatment.

To learn more about TGCT and the differences between the 2 types, click here.

To learn about ways you can support your loved one
through his or her TGCT journey, click here.

If you have been diagnosed with tenosynovial giant cell tumor (TGCT) or have symptoms of it,
you’ve come to the right place.

Here you’ll find facts and information that can help you talk with your doctor. You—or loved
ones and caregivers—can also find resources that may be helpful along the journey with TGCT.
For terms that appear in bold type, hover the cursor over them (or tap them on a
mobile device) to see their definitions.

TGCT is also known as pigmented villonodular synovitis (or PVNS) and
giant cell tumor of the tendon sheath (or GCT-TS).

Pronounced TEN-oh-sin-OH-vee-ul.

Pronounced PIG-men-ted vill-oh-NAWJ-you-ler sy-no-VY-tiss.

About TGCT

TGCT is a typically benign tumor (not cancerous) occurring in or around a joint. It can cause pain, swelling, stiffness in the affected joint, and other symptoms. TGCT can reduce the function of small and large joints. In some cases, it can damage them. Surgery may be a cure for many people with TGCT. For some, however, tumors may grow back after surgery.

TGCT is rare. Researchers don’t know exactly how many people are diagnosed with TGCT each year. However, a study done in the Netherlands was used to help calculate estimates of how many people are diagnosed with TGCT worldwide. It is estimated that only 43 people of every million are diagnosed with TGCT worldwide each year.

Two types of TGCT

It’s important to understand the differences between the two types of TGCT, as noted by the World Health Organization. One type is called diffuse TGCT; it is the less common type and in some cases is more challenging to treat. The other type is called localized TGCT; it is often cured with one surgery. Your prognosis (outcome) depends a lot on which type you have.

Differences between diffuse and localized TGCT

Diffuse TGCT (PVNS)
  • It is commonly seen in large joints, like the knees
    and hips.
  • The tumors are usually large and irregular in shape. Some diffuse tumors spread throughout a joint,
    making it difficult to remove them completely.
  • The tumors are difficult to remove fully by surgery.
  • The tumors may grow back after removal by surgery (recur) in up to 55% of patients.
Localized TGCT (GCT-TS)
  • It is commonly seen in small joints, like the fingers
    and toes.
  • The tumors are usually small. And because their
    borders are typically easy to see (in surgery), the tumors
    can be removed completely in many cases.
  • The tumors typically can be removed in one surgery.
  • The tumors may grow back after removal by surgery in up to 15% of patients.
TGCT fast facts
Our fact sheets cover basic information about diffuse and localized TGCT. Please download
them to help you, friends, or family members—really anyone in your life—learn more about
these rare tumors and how they may affect you.

In challenging cases of TGCT, patients can benefit from a team of healthcare
, as they will work together on a treatment plan. Your team could
include several specialists: surgeons, oncologists, radiologists, physical
therapists, and rehabilitation specialists. Ask your doctor which other types
of healthcare providers might participate in your care.