Frequently asked questions (FAQs) about TGCT
If you have recently been diagnosed with TGCT, you probably have lots of
questions.
Here you will find general information and answers to FAQs about diffuse or
localized TGCT.
Click a tab below to see answers to FAQs about diffuse or localized TGCT.
Diffuse TGCT FAQs
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 diffuse TGCT may affect you and to determine the best way to treat and manage it.
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.
In diffuse TGCT, tumors grow slowly. Symptoms also progress slowly. Because diffuse TGCT progresses slowly and its symptoms are not unique to just diffuse TGCT, it may take time to diagnose.
Diffuse TGCT tumors generally are not cancer. Diffuse TGCT is a typically benign tumor occurring in or around a joint that can reduce function and damage nearby tissues.
PVNS, or pigmented villonodular synovitis, is also known as diffuse TGCT. Compared to localized TGCT (another form of the disease), diffuse TGCT is less common, may be harder to treat, and is more likely to grow back (recur). Diffuse TGCT can recur after surgery in up to 55% of patients.
With diffuse 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.
Some experts believe that a team of healthcare providers may benefit people who have diffuse TGCT. By pooling the knowledge from different specialties, the team can work together to improve the outcomes of people with diffuse TGCT.
Guidelines from the National Comprehensive Cancer Network® (NCCN®)‡ recommend that a team of healthcare experts and specialists evaluate and treat 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).
‡Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Soft Tissue Sarcoma V.2.2023.©National Comprehensive Cancer Network, Inc. 2023. All rights reserved. Accessed May 30, 2023. 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.
Surgery is usually recommended to treat diffuse TGCT. Surgeons have the training and expertise to diagnose and remove diffuse TGCT. Medication also may be used to treat diffuse TGCT that keeps coming back. Talk with your doctor about medication for diffuse TGCT.
Diffuse TGCT can be challenging to treat. The tumors are often very large and irregular in shape, and their borders are not easy to see (in surgery). This makes it more difficult to remove them fully.
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.
Yes. Diffuse TGCT can recur after surgery in up to 55% 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 diffuse TGCT is different.
Talk with your doctor about setting up appointments to keep monitoring your condition. Perhaps you have been treated for diffuse TGCT and your symptoms have returned or you are concerned that your tumor may come back. If so, talk with your doctor.
The location of a joint affected by diffuse TGCT doesn’t seem to affect how likely diffuse 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. With diffuse TGCT, it can be difficult to remove the tumor fully.
Risks and complications can occur with any surgery, and you should discuss them with your doctor. In diffuse TGCT, tumors may grow back after removal by surgery in up to 55% of patients. If diffuse TGCT does grow back, it can result in multiple surgeries, which may damage the affected joint over time.
Diffuse 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.
Currently, no research indicates that diffuse TGCT is hereditary. It is not known exactly why people get diffuse TGCT.
When talking with your family and friends about diffuse 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 diffuse TGCT is located and how it affects your life. Remind them that diffuse TGCT is different for everyone.
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.
Most of the time, diffuse TGCT occurs only in one joint in the body; it is rarely found in more than one joint. In general, diffuse 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.
In general, more research is needed to learn whether people’s lifestyles can affect diffuse TGCT. Further research is also needed to see how people’s lifestyles are affected by living with diffuse TGCT.
Some people with diffuse TGCT have reported hearing popping, clicking, or cracking sounds when they move. Diffuse TGCT is different for everyone.
It may be helpful to read about some of the challenges people face while living with diffuse 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.
Localized TGCT FAQs
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.
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.
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.
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.
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.
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.
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 treat 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).
‡Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Soft Tissue Sarcoma V.2.2023. © National Comprehensive Cancer Network, Inc. 2023. All rights reserved. Accessed May 30, 2023. 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.
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.
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.
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.
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.
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.
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.
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.
Currently, no research indicates that localized TGCT is hereditary. It is not known exactly why people get localized TGCT.
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.
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.
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.
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.
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.
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.
