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Answer a question about your experience with TGCT.

Which best describes your
experience of getting
diagnosed with TGCT
(also known as PVNS or GCT-TS)?

I was diagnosed
by the first doctor
I saw for TGCT.
I saw many doctors
before I was diagnosed
with TGCT.
I have not
been diagnosed
with TGCT.

See how others responded: X

20% I was diagnosed
by the first doctor
I saw for TGCT.
55% I saw many doctors
before I was diagnosed
with TGCT.
25% I have not
been diagnosed
with TGCT.

Thank you.

Many TGCT cases can be resolved with just one surgery. But patients with
diffuse TGCT or TGCT that keeps coming back may benefit from working with a
team of healthcare specialists. These experts can help you on your journey with TGCT.

On this page and throughout this site, you can find more information about the
healthcare specialists who may be involved in your treatment.

TGCT can be hard to diagnose, and patients may see many doctors before being
diagnosed with it. If you think you have TGCT, you should talk with your doctor.

Click here to learn more about the signs and symptoms of TGCT.

Click a tab below to learn how diffuse or localized TGCT is treated.

DIFFUSE TGCT
(PVNS)
LOCALIZED TGCT
(GCT-TS)
Diffuse TGCT can be a challenge to treat

Two kinds of surgery are used to treat diffuse TGCT: open surgery and arthroscopic* surgery

* Pronounced AR-thruh-SKAW-pick.

Open surgery

Open surgery is commonly used to treat diffuse TGCT. During open surgery, surgeons use a blade to make a cut in the skin. The cut must be large enough for them to see and reach the tumor to remove it. Open surgery is often used when the tumor is diffuse and spread throughout the joint. Open surgery can be used in any joint.

Compared with arthroscopic surgery, open surgery may involve a longer hospital stay and longer recovery time.

Arthroscopic surgery

Arthroscopic surgery is less commonly used to treat diffuse TGCT. During arthroscopic surgery, surgeons use a blade to make a cut in the skin. Then they insert a narrow tube and camera, which allows them to see the inside of the joint on a video monitor. The tumor is removed with thin surgical tools that are inserted through other small cuts.

Compared with open surgery, arthroscopic surgery may involve a shorter hospital stay and recovery period.

Please note: The decision to have open or arthroscopic surgery is important. You and your healthcare providers should make the decision after examining your tumor and reviewing your history of TGCT. Results with open or arthroscopic surgery vary by person.

Diffused TGCT locations, shoulders, elbows, hips, knees, and ankles Diffused TGCT locations, shoulders, elbows, hips, knees, and ankles

Complete surgical removal of diffuse TGCT tumors is not always possible

  • Diffuse tumors cannot always be removed completely during surgery. One reason is because they are often very large and irregular in shape. Another reason is because the borders of the tumors are not easy to see (in surgery).
  • Tumors may be removed but come back again.
  • Surgery may not be an option due to medical reasons or features of the tumor.

Different types of doctors are likely to care for people with TGCT

Oncologists specialize in treating tumors, including some types of TGCT. For cases of TGCT that are hard to treat, care teams may also include sarcoma specialists. These doctors have experience treating tumors that are similar to TGCT. If tumors come back again and again, adding a sarcoma specialist to the healthcare team may make a positive difference.

Sometimes surgery is not expected to cure TGCT. Or it may not be an option for people with certain medical conditions. In those cases, medication may be used to treat it. To help manage TGCT symptoms, doctors may prescribe pain medications, anti-inflammatory medications, or steroidal drugs.

Ask your doctor about treatment options that do not involve surgery.

Ongoing care may be needed

In some cases, tumors can keep growing back after surgery. Because of this, the affected joint may not work well. When surgery is repeated, it may damage the joint over time. The damage can lead to osteoarthritis or—in some cases—the need for joint replacement.

If you have TGCT, it’s important to talk with your doctor about how it may affect you.

For some people with TGCT, adding a sarcoma specialist to the
healthcare team may make a positive difference.

Find centers specializing in sarcoma/TGCT in the United States.
Find centers specializing in sarcoma/TGCT across many different countries.

about knee
Recovery takes tenacitya “He had a 40% deficit in his thigh muscle from being in the leg immobilizer, so he had a lot of work to do. But I was just so proud of him and just in awe at the tenacity to say, ‘Okay, Mom, we’re going to do this,’ and I could see the pain when he’s doing the physical therapy, but he stuck with it.” —Caregiver of patient with recurrent,
diffuse TGCT in knee

a TGCT impacts everyone differently. This information is not meant to reflect the experience of all patients who have TGCT.

Talking with your specialist
about TGCT
Medical oncologists, orthopedic oncologists, and orthopedic surgeons may be
involved in your treatment. During your next appointment, you may find it helpful to use a
discussion guide when speaking with your specialist. Each of the discussion guides below
is for use with a specific specialist. The guides include basic information and common
questions about TGCT treatment, as well as space for you to make notes. Choose your guide
based on the specialist you are planning to visit, then print it, take it with you to your next
appointment, and use it to ask questions and take notes.

Discussion guide
for use with
medical oncologists

Download

Discussion guide
for use with
orthopedic oncologists

Download

Discussion guide
for use with
orthopedic surgeons

Download
Keeping a record of your
TGCT treatment
Because multiple specialists may be involved in your treatment for TGCT, you may find it
helpful to keep track of which doctor you saw and what took place at each appointment.
Download this interactive PDF and use it to record notes about your TGCT treatment.

My TGCT
treatment history

Download
Most patients are cured after one surgery

Two kinds of surgery are used to treat localized TGCT: arthroscopic* surgery and open surgery

* Pronounced AR-thruh-SKAW-pick.

Arthroscopic surgery

Arthroscopic surgery is commonly used to treat localized TGCT. During arthroscopic surgery, surgeons use a blade to make a cut in the skin. Then they insert a narrow tube and camera, which allows them to see the inside of the joint on a video monitor. The tumor is removed with thin surgical tools that are inserted through other small cuts.

Compared with open surgery, arthroscopic surgery may involve a shorter hospital stay and recovery period.

Open surgery

Open surgery is less commonly used to treat localized TGCT. During open surgery, surgeons use a blade to make a cut in the skin. The cut must be large enough for them to see and reach the tumor to remove it. Open surgery is often used when the tumor is diffuse and spread throughout the joint. Open surgery can be used in any joint.

Compared with arthroscopic surgery, open surgery may involve a longer hospital stay and longer recovery time.

Please note: The decision to have arthroscopic or open surgery is important. You and your healthcare providers should make the decision after examining your tumor and reviewing your history of TGCT. Results with open or arthroscopic surgery vary by person.

Diffused TGCT locations, shoulders, elbows, hips, knees, and ankles Diffused TGCT locations, shoulders, elbows, hips, knees, and ankles

Localized TGCT recurs (grows back) after surgery
in up to 15% of patients

Some localized tumors recur multiple times. Others cannot be treated with surgery due to medical conditions. In these cases, medication may be used to treat the TGCT. To help manage TGCT symptoms, doctors may prescribe pain medications, anti-inflammatory medications, or steroidal drugs.

If your localized TGCT keeps coming back, ask your doctor about treatment options that do not involve surgery.

Up to 15%

For some people with TGCT, adding a sarcoma specialist to the
healthcare team may make a positive difference.

Find centers specializing in sarcoma/TGCT in the United States.
Find centers specializing in sarcoma/TGCT across many different countries.

Talking with your specialist
about TGCT
Medical oncologists, orthopedic oncologists, and orthopedic surgeons may be
involved in your treatment. During your next appointment, you may find it helpful to use a
discussion guide when speaking with your specialist. Each of the discussion guides below
is for use with a specific specialist. The guides include basic information and common
questions about TGCT treatment, as well as space for you to make notes. Choose your guide
based on the specialist you are planning to visit, then print it, take it with you to your next
appointment, and use it to ask questions and take notes.

Discussion guide
for use with
medical oncologists

Download

Discussion guide
for use with
orthopedic oncologists

Download

Discussion guide
for use with
orthopedic surgeons

Download
Keeping a record of your
TGCT treatment
Because multiple specialists may be involved in your treatment for TGCT, you may find it
helpful to keep track of which doctor you saw and what took place at each appointment.
Download this interactive PDF and use it to record notes about your TGCT treatment.

My TGCT
treatment history

Download