Living with TGCT / PVNS | Support for Patients in Europe

TGCT (tenosynovial giant cell tumor) is a type of rare, non-malignant tumor affecting the joints and sometimes the surrounding area. TGCT can also be referred to as pigmented villonodular synovitis (PVNS).^1,2

Although TGCT is typically non-life threatening, it can have a significant impact on the lives of people with this disease.^1,2

While TGCT is rare, you are not alone in living with this disease, and many people with TGCT have similar questions. This website has been developed to offer general information and support for people living with TGCT and their caregivers. It will also point you towards further resources where you can access additional help.

We hope this website helps answer some of your questions about living
with TGCT.

Myths vs truths about TGCT

“TGCT is a type of cancer.”

This is a myth

TGCT is a non-malignant (benign) tumor, meaning it doesn't spread to other parts of the body, unlike cancer.¹ However, it can still grow within joints, causing pain, swelling and long-term damage over time if left untreated.³

Learn more about TGCT

“TGCT and PVNS are different diseases.”

This is a myth

Pigmented villonodular synovitis (PVNS) is a slightly older term used to describe TGCT, but it is still sometimes used today. You might have also heard about 'giant cell tumor of tendon sheath (GCTTS)', which is another name for TGCT.¹

Discover more about TGCT

“TGCT is harmless because it's benign.”

This is a myth

Living with symptoms such as pain and limited range of motion can affect work and social life.⁴

Learn more about the symptoms of TGCT

“The main treatment for TGCT is surgery.”

This is true

The standard treatment for TGCT is surgery, when it can be done without causing major complications. However, surgery might not be suitable for everyone. Research continues to look at other treatment options for people who might not be able to have surgery.^1,5

Find out more

“Even after the tumor is removed, TGCT can come back.”

This is true

Even after surgery, there is the risk that tumors can develop again (known as recurrence), especially in cases of diffuse TGCT.⁴

Learn more about the risk of recurrence following surgery

“TGCT is a rare disease, meaning there isn't a lot of patient support.”

This is a myth

TGCT may be rare, but you're not alone. There are dedicated communities and online resources to support people living with TGCT, including this website.

Visit the resources section of this website to find out more

GET THE SUPPORT YOU NEED

You can find a host of useful resources in the Support section, including downloadable information, links to patient organization sites and local specialized centers near you.

Real experiences,
real support.

Meet patients who are living with TGCT. Watch these videos to learn more about their stories. You can also visit our Patients Stories page to hear from others affected by TGCT.