Burden of TGCT

TGCT CAN WREAK HAVOC on A PATIENT'S LIFE

While TGCT is non-malignant, it can be locally aggressive, affecting an active, otherwise healthy adult population with pain, swelling, and stiffness in the affected joint that limits range of motion.^1,2

The longer a patient has experienced symptoms, the greater the risk of significant joint damage and bone destruction.^2-4

INFLAMMATION PLAYS A CENTRAL ROLE IN TGCT

In TGCT, the overexpression of CSF-1 in neoplastic cells leads to recruitment and accumulation of inflammatory cells expressing CSF-1 receptors, which make up the bulk of the tumor and drive symptoms.^1,5-7

TGCT can cause bone and cartilage erosion and can spread into the tissue surrounding the joint, particularly diffuse TGCT.1,6,9

DAMAGE FROM TGCT CAN BE IRREVERSIBLE

TGCT is a progressive disease that can ultimately lead to joint destruction and loss of function.¹ Because of the rarity of TGCT and its nonspecific symptoms, there can be a diagnostic delay of up to 3 or 4 years for some patients, during which time TGCT is growing and causing potentially irreversible damage to the patient’s joint.^3,10

THE BURDEN OF TGCT IS BOTH DEVASTATING AND PROGRESSIVE

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PHYSICAL BURDEN

Symptoms of TGCT include debilitating pain, swelling, stiffness, reduced range of motion in the affected joint, and trouble sleeping.^2,11

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PHYSICAL BURDEN

92% of patients with TGCT in a recent study reported pain²

83% said pain affected their daily activities, including their ability to focus and engage in physical activity²

85% had a limited range of motion in the affected joint²

OCCUPATIONAL BURDEN

TGCT typically strikes patients during their prime working years, between 30 and 50, and can affect both their personal and professional lives.²

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OCCUPATIONAL BURDEN

>75% of patients with TGCT said that pain affected their ability to do household chores, participate in family life, and engage in social activities²

~40% of patients with >2 surgeries for TGCT changed careers or retired early compared with 12% of patients who didn’t have surgery and 20% with just 1 surgery in a recent study²

BEYOND THE PHYSICAL

The mental health impact of chronic rare diseases, such as TGCT, can be serious. People living with rare diseases experience significantly higher rates of depression (69%) and anxiety (82%) compared to the general population (17%).^12, 13

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EVOLVING MANAGEMENT OF TGCT

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. 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 3. Nishida Y, Tsukushi S, Nakashima H, et al. Osteochondral destruction in pigmented villonodular synovitis during the clinical course. J Rheumatol. 2012;39(2):345-351. doi:10.3899/jrheum.110730 4. Spierenburg G, Staals EL, Palmerini E, et al. Active surveillance of diffuse-type tenosynovial giant cell tumors: a retrospective, multicenter cohort study. Eur J Surg Oncol. 2024;50(2):107953. doi:10.1016/j.ejso.2024.107953 5. Stone WL, Basit H, Zubair M, Burns B. Pathology, inflammation. In: StatPearls. Treasure Island (FL): StatPearls Publishing; August 11, 2024. 6. Spierenburg G, van der Heijden L, van Langevelde K, et al. Tenosynovial giant cell tumors (TGCT): molecular biology, drug targets and non-surgical pharmacological approaches. Expert Opin Ther Targets. 2022;26(4):333-345. doi:10.1080/14728222.2022.2067040 7. Riedel R, Verini C, Fuangtharnthip K, Felser B, Palma J, Occhiuzzi L. Improving resources and support for patients with tenosynovial giant cell tumor. April 26, 2021. Accessed August 27, 2025. https://media.cancercare.org/publications/original/431-2021_TGCT.pdf 8. Synovial Joints. University Pressbooks. Accessed August 27, 2025. https://university.pressbooks.pub/test456/chapter/synovial-joints/ 9. TGCT Support. About TGCT. Accessed August 27, 2025. https://www.tgctsupport.org/about-tgct.html. 10. Bernthal NM, Spierenburg G, Healey JH, et al. The diffuse-type tenosynovial giant cell tumor (dt-TGCT) patient journey: a prospective multicenter study. Orphanet J Rare Dis. 2021;16(1):191. doi:10.1186/s13023-021-01820-6 11. Cook NS, Landskroner K, Shah B, Walda S, Weiss O, Pallapotu V. Identification of patient needs and preferences in pigmented villonodular synovitis (PVNS) using a qualitative online bulletin board study. Adv Ther. 2020;37:2813–2828. doi:10.1007/s12325-020-01364-4 12. Shire. Rare Disease Impact Report: Insights from patients and the medical community. 2013. Accessed August 27, 2025. https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf. 13. Nunn R. “It’s not all in my head!” - The complex relationship between rare diseases and mental health problems. Orphanet J Rare Dis. 2017;12(1):29. doi.org/10.1186/s13023-017-0591-7

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US-NONOTGCT-00007 10/25

TGCT CAN WREAK HAVOC on A PATIENT'S LIFE

INFLAMMATION PLAYS A CENTRAL ROLE IN TGCT

DAMAGE FROM TGCT CAN BE IRREVERSIBLE

PHYSICAL BURDEN

PHYSICAL BURDEN

OCCUPATIONAL BURDEN

OCCUPATIONAL BURDEN

BEYOND THE PHYSICAL

The mental health impact of chronic rare diseases, such as TGCT, can be serious. People living with rare diseases experience significantly higher rates of depression (69%) and anxiety (82%) compared to the general population (17%).12, 13

SIGN UP FOR MORE INFORMATION ABOUT TGCT

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THIS SITE IS INTENDED FOR US HEALTHCARE PROFESSIONALS

The mental health impact of chronic rare diseases, such as TGCT, can be serious. People living with rare diseases experience significantly higher rates of depression (69%) and anxiety (82%) compared to the general population (17%).^12, 13