MORE CAN BE DONE TO OPTIMIZE TGCT PATIENT CARE
TGCT Is a Rare Non-malignant Tumour Affecting the Joints1,2
TGCT is sometimes known as PVNS (pigmented villonodular synovitis)3
5
per million
person-years
AGE AT DIAGNOSIS:
35
years3
INCIDENCE:
COMMON SYMPTOMS:
pain, swelling, stiffness and limited range of motion3
TWO CLINICALLY DISTINCT SUBGROUPS:
N-TGCT†
D-TGCT
Approximately 90% of cases4
Impacts smaller joints5
Well-defined mass5
Does not typically cause pain or joint dysfunction5
Approximately 10% of cases4
Impacts larger joints5
Poorly-defined mass5
More aggressive and destructive5
TGCT CAN LEAD TO CONSIDERABLE PHYSICAL AND PSYCHOLOGICAL BURDEN6–8
Physical and psychological burden6,7
Disruption to professional and social life6,8
92
Reported
Pain‡6
(n=457/497)
%
85
%
reported LIMITED RANGE OF MOTION‡6
(n=457/497)
83
%
REPORTED JOINT STIFFNESS‡6
(n=410/497)
19
%
presented with at least moderate anxiety or depression§7
(n=457/497)
63
%
WERE UNABLE TO PERFORM SPORT ACTIVITIES**8
(n=187/299)
23
changed occupation or retired prematurely due to TGCT‡6
(n=115/497)
%
MEDIAN TIME TO A TGCT DIAGNOSIS IS APPROXIMATELY 18 MONTHS9
Clinical presentation
Imaging
Suspected TGCT
Confirmed diagnosis
Symptoms are generally non-specific1
Contrast MRI (gadolinium-enhanced)3
biopsy A biopsy may be required for complex cases to confirm diagnosis3
Delayed diagnosis
TGCT is a slow, progressive disease with subtle radiographic changes, making early detection difficult9,10
Patients often visit multiple HCPs before receiving a TGCT diagnosis1
MISDIAGNOSIS
TGCT can be mistaken for other conditions (e.g., rheumatoid arthritis)1,11
Untreated patients
If left untreated, TGCT can become debilitating. Significant functional impairment is a potential complication9
ADVANCED DISEASE
Diagnosis delays may result in disease progression and further joint destruction11,12
SURGERY IS THE STANDARD OF CARE FOR TGCT BUT IS NOT ALWAYS CURATIVE3
Risk of recurrence: up to 15%13-16
Typically allows total resection7
Generally, patients report excellent or good clinical results with surgery7
Risk of recurrence: 72%10
Incomplete tumor removal is common, leading to worse clinical outcomes17
N-TGCT
D-TGCT
Patients may not be eligible for surgery for a number of reasons:
Tumour location, size, and complexity3
repeated surgery can cause further joint damage17
Comorbidities18
Challenges in the management of TGCT
Chemotherapy
Not indicated for TGCT3
Insufficient data to support the treatment of TGCT3
Radiotherapy/cryotherapy
Availability of therapies may differ across countries
Systemic therapies
D-TGCT and N-TGCT, respectively*2
Patients affected by TGCT should be managed within expert centers by a dedicated, experienced sarcoma multidisciplinary treatment team3
DCPHP03020 | February 2026
45
–
–
50
Click or scan the QR code to visit thinkTGCT.eu
*Incidence rates in The Netherlands (2009–2013).2 N-TGCT, also known as localized-type TGCT, is best referred to as nodular TGCT per the International Clinical Consensus.3 ‡The TGCT Support Registry (launched 2022), collected questionnaire data every six months on patients’ experiences. N=497 across 32 countries: diffuse (n=355), localized (n=94) and unknown subtype (n=48). Data cutoff: October 6 2022–December 6 2023.10 ¶Outcome from an EU subgroup analysis of TOPP (N=137), a prospective, observational study of patients with D-TGCT. Data was analysed at baseline (12 months prior to entry) and after 12 months of follow-up.11 §Members of the TGCT Facebook group, PVNS is Pants!!, completed a 6-month e-survey. Total: 337 responses from 30 countries (N-TGCT n=72; D-TGCT n=237).12
D-TGCT: diffuse-type TGCT; HCP: healthcare professional; N-TGCT: nodular-type TGCT; PVNS: pigmented villonodular synovitis; TGCT: tenosynovial giant cell tumour; TOPP: TGCT Observational Platform Project.
This material is intended for healthcare professionals in Europe only.
References: 1. Bernthal NM et al. Orphanet J Rare Dis. 2021;16(1):191. 2. Mastboom MJL et al. Acta Orthop. 2017;88(6):688-94. 3. Stacchiotti S et al. Cancer Treat Rev. 2023:112:102491. 4. Robert M et al. Front Immunol. 2022:13:820046. 5. Choi WS et al. Cancers (Basel). 2024;16(2):402. 6. Stern S et al. Future Oncol. 2025;21(12):1501-10. 7. Lopez-Bastida J et al. Orphanet J Rare Dis. 2021;16(1):294. 8. Mastboom MJ et al. Interact J Med Res. 2018;7(1):e4. 9. Ansel S et al. J Med Case Rep. 2023;17(1):419. 10. Gouin F, Noailles T. Orthop Traumatol Surg Res. 2017;103(1S):S91-7. 11. Fecek C, Carter KR, Pigmented Villonodular Synovitis [Internet] (2023) Treasure Island: StatPearls Publishing. Available at: https://www.ncbi.nlm.nih.gov/books/NBK549850/. Last accessed: 12. Wu CC et al. Ther Radiol Oncol. 2019;3:17. 13. Ehrenstein V et al. J Rheumatol. 2017;44(10):1476-83. 14. Palmerini E et al. Eur J Cancer. 2015;51(2):210-7. 15. Chiari C et al. Clin Orthop Relat Res. 2006;450:172-8. 16. Siegel M et al. PLoS One. 2021;16(12):e0260795. 17. Spierenburg G et al. J Surg Oncol. 2022;126(6):1087-95. 18. Kolh P et al. Eur J Vasc Endovasc Surg. 2016;51(6):857-66.
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