How Do Tenosynovial Giant Cell Tumors Form?
Tenosynovial giant cell tumors (TGCTs) form after gene changes happen inside certain cells that cover your joints. This condition can affect your quality of life because of bone pain. And if the tumor grows on your tendon sheath, the tissue covering your tendons, it can be harder to move your joints. Tendons are rope-like structures that connect your muscles to your bones.
Your chromosomes are made of DNA, your genetic code. A TGCT can grow after part of chromosome 1 accidently gets stuck on part of chromosome 2. This abnormality causes extra protein to get made called colony stimulating factor 1 (CSF1), which leads to a TGCT.
Types of TGCTs
TGCTs can grow and press on the small, fluid-filled sacs that cushion your larger joints, called diffuse TGCT. This type of TGCT grows faster and is more aggressive. Localized TGCT is more common, grows slowly, and is usually in the small joints of your hands and feet.
A TGCT doesn't always cause symptoms at first, and the symptoms can look like those of other conditions, like a sports injury. Find out how to look for TGCT symptoms, how the condition is diagnosed, and who's on your TGCT care team.
What Are TGCT Symptoms?
The symptoms of TGCT can mimic those of other things, like a sprain or arthritis, so it is important to talk to your doctor about changes. You may first see your regular doctor or a sports medicine specialist. Certain signs can help alert them that you may need certain tests to detect a TGCT.
Symptoms can also depend on your type of TGCT and where the tumor is inside your body. A growth in your hand can cause very different symptoms than one in your hip.
Localized TGCT symptoms
- Swollen joint
- Joint pops
- Pain in one joint that doesn't improve with ice, rest, or other treatment
- A painless lump in your joint that gets bigger over time
- Limited movement in one joint
Diffuse TGCT symptoms
- A swollen, stiff joint
- A joint that feels unstable, locks up, pops, or doesn't move as well without reason or injury
- Pain in your joint
You can also get osteoarthritis, cartilage damage, and bone erosion because diffuse TGCT can quickly grow and cause damage.
Who Gets TGCT?
Anyone can get TGCT, but some research suggests some types are more common in certain groups. But more studies are needed before doctors can be sure. In general, TGCTs show up between your 30s and 50s. Other studies say that diffuse TGCT happens most often in people between the ages of 25 and 40.
Who gets localized TGCT?
About 39 out of 1 million people in the world have localized TGCT. But your chances are higher if you are female or between the ages of 30 and 50. With localized TGCT, you usually get one tumor in one joint.
Being in one joint, not many, is a great clue for your doctor. These small tumors are usually about 2 centimeters (cm), the size of a peanut.
Who gets diffuse TGCT?
Most people who get TGCT have the localized form. Diffuse TGCT is very rare: Only 4 in 1 million people in the world get it. These tumors have a higher risk of coming back after treatment.
Your risk is higher for diffuse TGCT if you're younger than 40. These larger tumors can get up to 5 cm, the size of a lime. They grow faster and may invade your joint tissues, causing damage and pain.
Finding the Right Care
Managing your TGCT takes a team approach. You might see your primary care doctor first because of joint discomfort or swelling. You may also see a rheumatologist or sports medicine doctor to rule out other conditions like arthritis, a tear, or sprain.
A rheumatologist is a specialist who diagnoses and treats arthritis and related conditions. The pain and swelling around your joints from the TGCT can look like arthritis. Your rheumatologist can help you rule this out and suggest an orthopedic specialist.
Sports medicine doctors treat athletes and non-athletes. They are trained to treat injuries to your bones, muscles, joints, tendons, and ligaments. They do not perform surgery. A sports medicine doctor may also help you rule out injuries as the cause of your pain and inflammation.
Throughout your treatment, it's a good idea to see an orthopedic specialist. They can help you navigate this rare condition. Look for a doctor who has worked with TGCT patients before.
How to Keep It All Together
When working with a team of doctors, communication is key! Here are tips for keeping your appointments and doctors organized.
- Write down the names of all of your doctors and what they do.
- Keep a journal of each appointment in one book to refer to at your appointments.
- Ask your primary care doctor to help you coordinate across doctors.
- A geriatrics doctor (a doctor who works mostly with older people) can also help with coordination.
- Try to schedule appointments on the same day in the same part of town.
- Ask doctors to share test results, notes, and treatment plans with each other.
For more resources about TGCT, try TGCTSupport.org or the Musculoskeletal Tumor Society website.
Show Sources
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SOURCES:
American Academy of Orthopedic Surgeons: "Orthopedic surgeons: restoring mobility and keeping our nation in motion."
American Psychiatric Association: "Chronic Pain and Mental Health Often Interconnected."
Cleveland Clinic: "Physical Therapist," "Radiologist," "Sports Medicine Physician," "Tendons," "Tenosynovial Giant Cell Tumors."
John Hopkins Medicine: "Orthopedic Surgery."
Kaiser Permanente: "Working with More Than One Doctor."
Mayo Clinic: "Orthopedic Oncology."
National Institutes of Health: "Medical Oncologist."
National Organization for Rare Diseases: "Tenosynovial Giant Cell Tumors."
Radiological Society of North America: "Giant Cell Tumor of Bone: Review, Mimics, and New Developments in Treatment."
TGCTSupport.org: "Diagnosis," "Nutrition," "Recovery," "Surgery," "Causes of TGCT," "Types of TGCT," "What Is A Tenosynovial Giant Cell Tumor?"
National Cancer Institute: "Centimeter."
