The following information does not replace medical advice from your doctor or other healthcare providers. It is important to meet with your doctor to learn more about how localized TGCT may affect you and to determine the best way to treat and manage it.

What is TGCT?

Tenosynovial giant cell tumor (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. It also can reduce function and damage nearby tissues.

TGCT is known by type, localized or diffuse, depending on how it grows. Diffuse TGCT is also known as pigmented villonodular synovitis* (or PVNS). Localized TGCT is also known as giant cell tumor of the tendon sheath (or GCT-TS).
The World Health Organization uses TGCT as the overall term for these rare tumors.

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

How quickly do localized TGCTs grow?

In localized TGCT, tumors grow slowly. Symptoms also progress slowly. Because localized TGCT progresses slowly and its symptoms are not unique to just localized TGCT, it may take time to diagnose.

Is localized TGCT a type of cancer?

Localized TGCTs generally are not cancer. Localized TGCT is a typically benign tumor occurring in or around a joint that can reduce function and damage nearby tissues.

Is GCT-TS the same as TGCT?

GCT-TS, or giant cell tumor of the tendon sheath, is also known as localized TGCT. Compared to diffuse TGCT, localized TGCT is more common and is often cured with one surgery. Localized TGCT can recur after removal by surgery in up to 15%
of patients.

What causes the symptoms I’m having?

With localized TGCT, the synovium^† (thin layer of tissue that lines the joints) thickens. This can cause swelling, pain, and stiffness in the affected joint.

^† Pronounced sin-OH-vee-um.

What doctors should I see for localized TGCT?

Some experts believe that a team of healthcare providers may benefit people who have localized TGCT. By pooling the knowledge from different specialties, the team can work together to improve the outcomes of people with localized TGCT.

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).

For a list of doctors and specialists that may be involved in managing localized TGCT, visit our TGCT treatment section.

^‡ 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.org. 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.

How is localized TGCT treated?

Surgery is usually recommended to treat localized TGCT. Surgeons have the training and expertise to diagnose and remove localized TGCT. Medication also may be used to treat localized TGCT that keeps coming back. Talk with your doctor about medication for localized TGCT.

Is there a cure for localized TGCT?

For localized TGCT, surgery is often a cure. The borders of the tumors are easy to see (in surgery), which makes it easier to remove them fully.

What is recovery like after surgery for localized TGCT?

After surgery, physical therapy is essential. It helps you regain strength and movement in the affected joint, which can help you return to your daily activities.

Can localized TGCT come back?

Yes. Localized TGCT can recur after removal by surgery in up to 15% of patients.

When a tumor grows back, it may be marked by the return of symptoms (like increased pain or decreased movement in the affected joint) for no apparent reason. It can also be marked by a new tumor mass. Every person’s experience with localized TGCT is different.

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

Does localized TGCT grow back more often in some joints than in others?

The location of a joint affected by localized TGCT doesn't seem to affect how likely localized TGCT is to grow back. How likely it is to come back seems to depend on whether or not the tumor was completely removed during surgery.

What are the risks and complications of surgery?

Risks and complications can occur with any surgery, and you should discuss them with your doctor. In localized TGCT, tumors may grow back after removal by surgery in up to 15% of patients. If localized TGCT does grow back, it can result in multiple surgeries, which may damage the affected joint over time.

What happens if localized TGCT is not treated?

Localized TGCT can grow in or around a joint. If left untreated, this may cause damage to the joint and the tissue surrounding it. This damage may lead to increased pain and decreased movement in the affected joint. It is possible that arthritis can develop as well.

Is localized TGCT hereditary?

Currently, no research indicates that localized TGCT is hereditary. It is not known exactly why people get localized TGCT.

How do I explain localized TGCT to my family and friends?

When talking with your family and friends about localized TGCT, you may want to ease their minds first. You might start by telling them that these rare tumors are not cancer. You may also find it helpful to tell them where the localized TGCT is located and how it affects your life. Remind them that localized TGCT is different for everyone.

If they want to learn more about localized TGCT, you can refer them to this website. You can also share the handy Localized TGCT fast facts sheet that explains localized TGCT.

Lastly, some family and friends may want to help you in some way. If so, try to think of a few tasks they may be able to assist you with.

Does localized TGCT grow in more than one joint at a time?

Most of the time, localized TGCT occurs only in one joint in the body; it is rarely found in more than one joint. In general, localized TGCT does not spread to other joints or to other areas of the body. However, it can progress and get worse in the joint that is affected. If it does, this can cause damage to the bone and the tissue surrounding the joint.

Can lifestyle affect localized TGCT (things like diet or exercise)?

In general, more research is needed to learn whether people’s lifestyles can affect localized TGCT. Further research is also needed to see how people’s lifestyles are affected by living with localized TGCT.

Are popping or other noises in a joint typical with localized TGCT?

Some people with localized TGCT have reported hearing popping, clicking, or cracking sounds when they move. But that is usually more common in those who have diffuse TGCT. Localized TGCT is different for everyone.

How can localized TGCT affect physical activity?

It may be helpful to read about some of the challenges people face while living with localized TGCT. Also, it may be helpful to read about what they are capable of doing. Remember that everyone’s experience is unique and may be different from yours. Speak with your healthcare provider about what physical activity may be appropriate for you.