Taking charge of life with TGCT
Viviane, patient with TGCT looking out a window
Viviane, patient with TGCT looking out a window
My biggest tip on how to manage this disease is to talk to everyone you can possibly find who has the disease.
– Viviane, Living with TGCT
Viviane moving while living with TGCT
Viviane moving while living with TGCT
Preparing for your doctor’s appointments
When you have tenosynovial giant cell tumor (TGCT), it can be difficult to remember how your body feels day-to-day. It’s a good idea to keep track of how you’re feeling using the TGCT & Me app and share any trends you’ve noticed with your care team. You may also want to take note of things you want to talk about with your care team at your next appointment, such as what your symptoms are and if they are impacting your life.
Understanding your treatment options
Your doctor may recommend surgery or prescription medicine to shrink your tumor. They may also use imaging to monitor your tumor. Magnetic resonance imaging (MRI) can show how you are responding to surgery or prescription medications before new symptoms develop or worsen.1
No one treatment is right for everyone. Prescription medicines may target an underlying cause of tumor growth but don’t always shrink the tumor. Surgery, on the other hand, does not always remove the entire tumor and may need to be repeated for some people. You and your care team will work together to create the best treatment plan for you. Please review the questions below that you may want to ask yourself as you prepare for discussions with your healthcare team.1-6
Questions to ask your doctor:
- What are my treatment options?
- How will treatment fit into my daily life and activities?
- How well does treatment remove or shrink TGCT?
- Will treatment help with pain, stiffness, and range of motion?
- Will I need more than one surgery?
- What does recovery from surgery look like?
- Will I need to take TGCT medication permanently?
- How likely is it that my tumor will come back after treatment?
- What side effects may be associated with different treatment options?
Remembering to take your medicine
If you and your doctor decide prescription medicine is right for you, you will need to take it on a set schedule to make sure it works. You may want to create reminders on your phone, use a pill organizer, or pair taking your medication with another activity to make it easier to remember.
You can also download the TGCT & Me app to keep track of your reminders together in one place.
TGCT and Me app homepage on a phone screen
Get resources that fit into everyday life
The TGCT & Me app brings information on TGCT and helpful resources together in one place. The app was developed and shaped in partnership with the TGCT community, based on feedback from people living with TGCT. Download the TGCT & Me app to explore the following features:
Learn about TGCT
- Track how you're feeling, including your pain and stiffness
- Check out recipes
- Get exercise ideas
- Find tools to support your emotional well-being
References
1. Stacchiotti S, Dürr HR, Schaefer IM, et al. Best clinical management of tenosynovial giant cell tumour (TGCT): a consensus paper from the community of experts. Cancer Treat Rev. 2023;112:102491. doi:10.1016/j.ctrv.2022.102491. 2. Romvimza. Prescribing information. Deciphera Pharmaceuticals, LLC; 2025. 3. Turalio. Prescribing information. Daiichi Sankyo, Inc.; 2025. 4. Aykan NF, Özatlı T. Pigmented villonodular synovitis and tenosynovial giant cell tumor: a comprehensive review. World J Clin Oncol. 2020;11(2):53-73. doi:10.5306/wjco.v11.i2.53. 5. Stern S, McKenzie PF, Bernthal N, et al. Localized and diffuse tenosynovial giant cell tumor: real-world results from a patient observational registry. Future Oncol. 2025;21(12):1501-1510. doi:10.1080/14796694.2025.2488635. 6. Mosher H, Dean K, Meli G, et al. Current treatment strategies for diffuse tenosynovial giant cell tumor: a review of the literature. JB JS Open Access. 2026;11(1):e25.00313. doi:10.2106/JBJS.OA.25.00313