This site is an educational resource for patients and caregivers. Connect with us Locate a treatment center

Additional information about TGCT, including answers to common questions, is provided below. You can also talk with your doctor to learn more.

TGCT is known by other names

TGCT can be called different terms, depending on various medical resources, areas of the world, and some doctors. PVNS, GCT-TS, and TGCT are terms that refer to the same disease.

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.

What makes TGCT grow?

Researchers have learned more about how TGCT grows. A small number of cells in the lining of the joint have a defect. The defect makes them produce too much of a protein called colony-stimulating factor 1 (CSF-1). Researchers believe the protein acts like a magnet: it attracts other cells that don’t belong there, which merge and form the tumor.

tgct cells

TGCT and daily life

Research on TGCT so far has focused on how it affects the physical well-being of people. For example, daily activities like doing household chores, walking up and down stairs at one’s normal pace, and carrying groceries can become difficult for people who have TGCT. However, research on how TGCT impacts the mental, social, or emotional well-being of people is somewhat limited.

Some medical studies have shown how TGCT affects the body. Some medical publications report unfavorable outcomes that may occur when repeated surgeries are used to treat TGCT that recurs (grows back). These unfavorable outcomes may include stiffness, development of osteoarthritis, and loss of joint function. In general, further research is needed in TGCT, especially about the mental, social, and emotional impact it may have on people’s daily lives.

If you have TGCT, you might be feeling nervous, sad, or just different from how you used to feel. You are not alone in having some of these feelings. Reading about some of the challenges—and the strength—of people who are living with TGCT can be helpful. As you learn more, remember that each experience is unique and may be different from yours.

Explore organizations on our Resources page of this site, where you can find support and connect with other people living with TGCT.

Knee note
You’re not alonea

“You’re going to feel alone,
but you’re not. There are other people
who have gone through it.”

—Person with diffuse TGCT in the knee

a TGCT impacts everyone differently. This information is not meant to reflect the experience of all patients who have TGCT.

Common questions about TGCT

You may have a lot of questions about TGCT. Below we’ve included a few frequently asked questions and answers to get you started. You’ll find many more on the Resources page of this site. You can share the questions below with friends and family with just one click.

Is TGCT a type of cancer?

While TGCT is a tumor, it is not cancer. TGCT is typically a benign tumor in or around a joint. It can reduce function of the joint and damage nearby tissues.

Can TGCT come back?

Every person’s experience with TGCT is different. Tumors that grow back may be marked by one or more things: symptoms that return, pain that increases, movement in the joint (range of motion) that becomes limited without explanation, or a new mass that develops.

Talk with your doctor about setting up appointments to keep monitoring your condition. If you’ve been treated for TGCT, your symptoms may have returned or you might be concerned that your tumor may come back. If so, talk with your doctor.

What doctors should I see for TGCT?

Some experts believe that when healthcare providers from different specialties work together, the outcomes for people with TGCT can be improved.

Guidelines from the National Comprehensive Cancer Network® (NCCN)* recommend that a team of healthcare experts and specialists evaluate and monitor patients who have TGCT. The team should have both expertise and experience in treating sarcomas. Sarcomas are tumors that start in cells of bones or connective tissues (like muscle and fat).

Click here to learn more about the healthcare experts and specialists who may work together to help diagnose and treat TGCT.

* Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines® for Soft Tissue Sarcoma V.1.2021. © National Comprehensive Cancer Network, Inc. 2020. All rights reserved. Accessed December 23, 2020. To view the most recent and complete version of the guideline, go online to NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.

Do you have more questions about TGCT? You can download a resource
to help you talk with your doctor about TGCT.