Tenosynovial giant tumors (TGCTs) are rare, usually noncancerous (benign) tumors. These tumors affect the joints, most commonly your knees, fingers, wrists, and elbows. Because they affect your joints, they can cause complications, some of them serious. Sometimes the complications may come from the treatments, like surgery.
What Do Tenosynovial Giant Tumors Do to a Joint?
When a TGCT begins to grow in a joint, it can affect three different parts:
- Synovium, the thin lining on the inner surface of the joint
- Bursae, the small, fluid-filled sacs that provide a cushion between the joints and tendons
- Tendon sheath, the thin lining surrounding the tendons
As the tumor grows, it causes tissue in your joint to thicken, swell, or make extra fluid. This puts pressure on the cartilage (tissue that acts as a shock absorber in your joints and protects the bones from rubbing together) and the bone surrounding the joint.
If the tumor continues to grow, the cartilage starts to wear away. Eventually, the bones start to rub together, causing arthritis.
What Are the Symptoms of Tenosynovial Giant Tumors?
The swelling, pressure, and friction in your joint can cause:
- A lump or bump in the joint
- Pain, especially when moving the joint
- Skin that feels warm or tender over the joint
- Stiffness in the joint
- Swelling in the joint
- A sensation that your joint is locking or catching
- Breaks (called fractures) in the bones around the joint
Another complication related to TGCTs is that these tumors can grow back after surgery. They can be recurrent, which means you might need more surgeries over time.
Do Tenosynovial Giant Tumors Have to Be Treated?
Not all TGCTs must be treated. In some cases, doctors choose to use active surveillance or “watchful waiting” to see if the tumor will grow, cause symptoms, or cause damage. If your doctor chooses active surveillance, you will be watched closely and have to go for regular tests to see what the tumor is doing. If the tumor starts to progress or cause damage, your doctor may suggest treatments.
What Happens If Tenosynovial Giant Tumors Aren’t Treated?
If symptomatic TGCTs aren’t treated, they can continue to grow, filling the joint and entering surrounding tissues. This can cause:
- Pain, swelling, stiffness: Increased pain and swelling in your knees can make it hard for you to move around, work, or perform routine tasks. Pain and swelling in your hands, fingers, or wrists can restrict how much you can do, even getting dressed.
- Joint locking or weakness: If your weight-bearing joints lock or feel unstable, this can cause you to fall, which can lead to other injuries.
- Arthritis: Over time, the damage caused to your joint could cause arthritis.
- Fractures: The bones around the tumor can break.
What Are the Long-Term Effects or Side Effects of Tenosynovial Giant Tumor Treatments?
All medical treatments have some possible side effects, complications, or long-term effects. Some are more serious than others. Here are some of the more common ones related to TGCT treatments.
Surgery
Possible complications after having any surgery include:
- Nausea and vomiting
- Pain at the surgical site
- Sore throat from the intubation (the tube placed in your throat)
- Infections
- Blood loss
Complications that could happen after surgery specifically for TGCTs include:
- Damage to the cartilage
- Scarring
- Joint stiffness
- Bleeding in the joint (hemarthrosis), which may need draining
- Reduced movement in the joint
Long-term effects could include:
- Osteoarthritis
- Reduced movement in the joint
- Recurrence: The tumors can come back and your surgeon may have to do the surgery again.
Medications
If your doctor chooses to treat the TGCT with medications, there are several side effects to watch for, but they depend on which medication is prescribed. It’s important to speak with your doctor and especially your pharmacist to find out which side effects are specific for the drug you are taking.
Some of the most common side effects of pexidartinib include:
- Numbness or feelings of burning, tingling, or “pins and needles” in your hands, feet, arms, or legs
- Changes in your hair color
- Trouble having a bowel movement
- Eye swelling
- Stabbing pain
Some of the most common side effects of imatinib (Gleevec), which is used off-label, include:
- A feeling of acid or “sourness” in your stomach
- Burping, passing gas
- Difficulty having a bowel movement or having frequent or loose stools
- Feeling unusually cold
- Feeling sad, losing interest or pleasure in life
- Muscle stiffness
- Night sweats
Some of the most common side effects of nilotinib, which is used off-label include:
- Back pain
- Feeling burning, itching, and pain in areas of your body that have a lot of hair
- Diarrhea
- Joint pain or swelling
- Pain in your arms or legs
- Pus at the root of your hair
Radiation therapy
Radiation therapy isn’t often used treat TGCT anymore, but if your doctor recommends this treatment, these are some of the most common complications:
- Joint stiffness
- Joint damage
- Fibrosis (thickening or scarring of the tissue)
A long-term effect of having radiation therapy could be a risk of cancer later, caused by the radiation.
What Is Tenosynovial Giant Tumor Rehabilitation?
If you have surgery to remove a TGCT, you typically will need some rehabilitation to make sure your joint heals and you have as much range of motion and use as possible. How much physical therapy and rehabilitation you will need depends on how severe the tumor was, where it was, and how extensive the surgery was. Arthroscopic surgery (also called arthroscopy) is a type of surgery that uses smaller incisions and special tools and a camera, usually has a shorter recovery and rehabilitation time than an open surgery. Open surgeries use a larger incision so the surgeon can see inside the joint.
Rehabilitation should start within 1 or 2 days if there are no complications or issues that prevent you from starting.
At the very least, you will likely have to do some range-of-motion exercises so you can use your joint again. Range-of-motion exercises help your joint:
- Get stronger
- Increase or improve endurance
- Maintain and increase its current range-of-motion
These exercises can also promote circulation and blood flow to the area.
If your surgery was on a weight-bearing joint like your hip or knee, you will need other exercises to make sure you’re up and about again. You might need a special machine called a continuous passive motion (CPM) machine. This is a device that helps your leg move without putting extra pressure on the joint, helping reduce or prevent your joint from becoming stiff and developing scars in the joint – joint adhesions.
How your doctor chooses to treat you depends on many factors. Any type of therapy to treat TGCT could cause a complication, but not everyone experiences complications. It's important that you speak with your doctor so you can understand the issues involved and what your risks are so you can make an informed decision.
Show Sources
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SOURCES:
Aurora BayCare Medical Center: “Upper Extremity Active Range of Motion – Sitting.”
Cleveland Clinic: “Cartilage,” “Giant Cell Tumors.”
European Journal of Surgical Oncology: “Active surveillance of diffuse-type tenosynovial giant cell tumors: A retrospective, multicenter cohort study.”
Hematology/Oncology and Stem Cell Therapy: “Updates on the Treatment of Tenosynovial Giant Cell Tumor (TGCT).”
Johns Hopkins Medicine: “After Surgery: Discomforts and Complications.”
Mayo Clinic: “Pexidartinib (Oral Route),” “Imatinib (Oral Route),” “Nilotinib.”
Merck Manual: “Joint Tumors.”
Nationwide Children’s: “What Are Tenosynovial Giant Cell Tumors?”
National Organization for Rare Disorders: “Tenosynovial Giant Cell Tumor.”
PLoS One: “Treatment, recurrence rates and follow-up of Tenosynovial Giant Cell Tumor (TGCT) of the foot and ankle—A systematic review and meta-analysis.”
TGCT Support: “Treatment,” “Radiation,” “Physical Therapy.”
