Managing
TGCT
How is TENOSYNOVIAL GIANT CELL TUMOR (TGCT) treated?
There are several ways to manage TGCT, including surgery, systemic treatment (a prescription medicine), and active surveillance. Sometimes, your care team may suggest supportive care, like physical therapy and pain management, to help manage your TGCT symptoms.
Ultimately, because everyone's experience is different, you and your care team will work together to determine a treatment plan that works best for you and your treatment goals.
WHAT TO EXPECT FROM TREATMENT
Surgery
The goal of surgery is to remove as much of the TGCT as possible. For localized/nodular TGCT, surgery may be the best treatment option, and there's potential for complete removal of the tumor. When complete removal isn't possible, surgery may instead focus on reducing symptoms and preserving joint function.
Recovery after surgery can involve temporary pain, swelling, and limited mobility that gradually improves over weeks to months. Everyone heals at their own pace, but rest, symptom management, and physical therapy can help the healing process.
Systemic Treatment
The goal of systemic treatment is to shrink TGCT, reduce symptoms, and improve quality of life. These medicines should be taken as prescribed, which can support better long-term results for your joint health, comfort, and mobility.
Systemic treatment involves taking medicine on a regular schedule. You may experience some side effects with these medicines, such as edema (swelling), muscle cramps, nausea, diarrhea, and fatigue. Staying in touch with your care team can help you understand what to expect and how to manage side effects.
What is Recurrence?
Recurrence is when TGCT grows back in the same joint after treatment. The chance of TGCT coming back is higher for patients with diffuse TGCT and for those who have already had it return after a previous surgery.
Diffuse TGCT recurrence rate
IS UP TO
72
%
Localized TGCT recurrence rate
IS UP TO
15
%
Diffuse TGCT
recurrence rate
IS UP TO
72
%
Localized TGCT
recurrence rate
IS UP TO
15
%
WAYS TO MONITOR RECURRENCE
Magnetic resonance imaging (MRI) is the preferred imaging method for detecting recurrence. Symptoms are used to track when MRIs may be needed.
Your doctor can help monitor for recurrence in a few different ways. This may include:
Regular follow-up visits and physical exams, where your doctor checks for any worsening symptoms or signs of TGCT coming back
MRI scans, which offer the clearest picture of what's happening inside the joint
Talk to your care team about your individual risk of recurrence based on your type of TGCT, how often you should come in for follow-up appointments, and which signs or symptoms to watch for.
THE GOOD NEWS?
You have options.
Choosing how to be treated is a decision you'll make together with your care team, based on what's best for you both physically and emotionally.
Meeting with your doctor as early as possible after your diagnosis can help you understand and talk through all of your treatment options.
What to ask your care team
How well the treatment shrinks tumors, and improves symptoms like pain and stiffness
If the treatment improves joint mobility or ability to complete everyday tasks
Any side effects, and how the treatment fits into your daily life
The chance of recurrence with this treatment option
BE YOUR OWN ADVOCATE FOR YOUR TGCT
Living with the burden of TGCT doesn't have to be your only option. Consider asking for a center with a multidisciplinary care team of oncologists, orthopedic oncologists, radiologists, physical therapists, and others that treat TGCT or similar diseases at the time of diagnosis. Then you can work with the team to help create an individualized care plan that's right for you.
TGCT Support is an independent organization that is not affiliated with Deciphera. Deciphera is not responsible for the content on TGCT Support's website or any services or materials it may provide, including development of and/or information contained in the TGCT Specialist List (the “List”). This link is being provided for informational purposes only. Deciphera does not endorse or recommend any specific physician or center included in the List and makes no representations or warranties about the services they provide.