Tenosynovial Giant Cell Tumor

What are tenosynovial giant cell tumors?

Tenosynovial giant cell tumors are noncancerous growths that form in the soft tissue around your joints. They’re always benign tumors, which means they aren’t cancer and can’t cause it.

Tenosynovial giant cell tumors are a rare type of giant cell tumor. They usually don’t spread to other parts of your body, but they can develop and grow quickly.

Depending on where it’s growing, a tenosynovial giant cell tumor can make it hard or painful to move that part of your body. They can also lead to bone fractures by putting pressure on your bones.

You’ll probably need surgery to remove a tenosynovial giant cell tumor. Some people also need radiation therapy.

How does a tenosynovial giant cell tumor affect my body?

There are three types of tenosynovial giant cell tumors that grow on different types of tissue in your body, including:

• Giant cell tumors of the synovium (the tissue that lines your joints).
• Giant cell tumors of the tendon sheath (the protective sleeves that surround your tendons).
• Giant cell tumors of the bursa (the fluid-filled sacs that protect some places where muscles, tendons and bones meet).

Tenosynovial giant cell tumors can develop anywhere in your body, but the most common locations include your:

• Fingers or thumbs.
• Ankles or feet.
• Knees.
• Wrists.
• Elbows.

People who’ve had a tenosynovial giant cell tumor are more likely to develop rheumatoid arthritis or osteoarthritis in their affected joint.

Who is affected by tenosynovial giant cell tumors?

Anyone can develop a tenosynovial giant cell tumor. They’re more common in certain groups of people, including:

• Women and people assigned female at birth (AFAB).
• Adults ages 30 to 50.

How common are tenosynovial giant cell tumors?

Tenosynovial giant cell tumors are very rare. Fewer than 50 in every 1 million people worldwide develop tenosynovial giant cell tumors each year.

What are the symptoms?

The most common symptoms of a tenosynovial giant cell tumor include:

• A noticeable bump or lump.
• Pain that gets worse when you move the affected part of your body.
• Swelling.

You’ll probably also have symptoms in the joint near the tenosynovial giant cell tumor, including:

• A catching, locking or popping feeling when you move your joint.
• Heat or warmth on the skin around your joint.
• Stiffness.
• Your joint feeling unstable or weak.

Which symptoms you experience and how severe they are depends on a few factors, including:

• Which type of tissue the tumor is growing in.
• Where in your body it is.
• How big it is.

Lots of people experience symptoms for years before a tenosynovial giant cell tumor is diagnosed. Make sure to talk to your provider about any changes you notice in your body.

What causes tenosynovial giant cell tumors?

Experts aren’t sure what causes tenosynovial giant cell tumors. However, some studies have found a link between people who develop tenosynovial giant cell tumors and certain changes in their chromosomes.

Chromosomes are the central part of your cells that contain your DNA. Anything that damages your chromosomes can cause changes in your body. Specifically, experts think a translocation — what happens when some of your chromosomes break apart then reconnect in new pairs — causes tenosynovial giant cell tumors.

How are tenosynovial giant cell tumors diagnosed?

Your provider will diagnose a tenosynovial giant cell tumor with a physical exam and imaging tests.

Depending on where the tumor is, you might be able to feel and see it under your skin. Your provider will examine the lump and the area around it. They’ll also use one of a few imaging tests to take pictures of the tumor, including:

• X-rays.
• MRI (magnetic resonance imaging).
• Ultrasound.

Your provider might also biopsy the tumor or the tissue around it.

How are tenosynovial giant cell tumors treated?

Tenosynovial giant cell tumors are usually removed with surgery. Your surgeon will remove the tumor with open surgery or by arthroscopy. They might also remove the affected tissue around it, too.

During arthroscopy, your surgeon will make a few tiny cuts on the outside of your body. Then they’ll insert an arthroscope (a long, thin tube with a video camera and light on the end) to see inside your joint. They’ll use small tools to excise — the medical term for remove — the tumor and any other damaged tissues.

Your surgeon will tell you which type of surgery you’ll need and what to expect. How long it takes to recover depends on:

• Where in your body the tumor is.
• How big it is.
• How much other tissue your surgeon needs to remove during arthroscopy.

Some tenosynovial giant cell tumors can be treated with a form of chemotherapy. Chemotherapy is usually used to treat cancer. Some types of chemotherapy can target and destroy benign growths like tenosynovial giant cell tumors.

Tenosynovial giant cell tumors have a high recurrence rate. This means that even after successful surgery to remove them or chemotherapy to destroy them, there’s a good chance another tenosynovial giant cell tumor will grow back.

It’s extremely rare, but if the tumor has severely damaged your joint, you might need an amputation.

How can I prevent a tenosynovial giant cell tumor?

You can’t prevent a tenosynovial giant cell tumor from forming in your body. Because experts aren’t certain what causes them, there’s no way to predict when — or why — you’ll develop one.

What can I expect if I have a tenosynovial giant cell tumor?

You should expect to make a full recovery after having a tenosynovial giant cell tumor removed. After the tumor is removed, you’ll need regular follow-up appointments with your provider. They’ll monitor your recovery and check for signs that other tumors are developing. That way, they’ll be able to catch new tumors as soon as possible and treat them right away.

Even though they aren’t cancer (and can’t cause cancer), there’s a very good chance you’ll develop more tenosynovial giant cell tumors. More than half of people develop them again, either in the same location or in other tissues throughout their body. Your provider might refer to this as a recurrence.

Will I need to miss work or school while I’m recovering?

You might have to miss work or school while you’re recovering from having a tenosynovial giant cell tumor removed. If you need to be on your feet at work and the tumor was in your ankle, or if you need surgery on a finger and you type on a computer a lot, you might need to miss some work or classes to give your body time to heal. Your recovery timeline depends on where you needed surgery and how big the tumor was. Your surgeon will tell you what to expect.

Talk to your provider or surgeon before resuming any physical activity after your surgery.

When should I see my healthcare provider?

Visit your healthcare provider if you notice a bump or lump growing anywhere on your body, especially if it’s painful. Even if it’s not a tenosynovial giant cell tumor, the faster you get a growth examined by your provider, the more likely it is you can get it diagnosed and treated early.

Go to the emergency room if you suddenly can’t move one of your joints.

What questions should I ask my doctor?

• Which type of tenosynovial giant cell tumor do I have?
• Which tests will I need?
• Will I need surgery?
• How likely is it that the tumor will come back?

What is the difference between tenosynovial giant cell tumors vs ganglion cysts?

Tenosynovial giant cell tumors and ganglion cysts are both growths that affect your joints.

The biggest difference between them is where they grow. Tenosynovial giant cell tumors grow in tissue in or around your joints. Ganglion cysts are fluid-filled growths just below your skin.

Both tenosynovial giant cell tumors and ganglion cysts are never malignant, which means they aren’t cancerous.

Visit your provider if you notice any new bumps or growths on your skin, especially if they hurt or make it hard for you to move a joint.

A note from Cleveland Clinic

Learning you have any kind of tumor is scary. But tenosynovial giant cell tumors are never cancer, and they can’t cause cancer. You’ll probably need surgery to remove the growth. Once you’ve been diagnosed with one tenosynovial giant cell tumor, it’s likely you’ll develop more in the future.

Talk to your provider about what to look for, and make sure to get any new growths or lumps examined right away.