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Outlook for patients with TGCT

Key factors

Prognosis differs mainly based on tumor subtype, location, and recurrence and may be impacted by management approach.1-4

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Tenosynovial giant cell tumor (TGCT) is a non-malignant neoplasm, which can be locally aggressive, but does not affect survival. The prognosis of TGCT is largely related to tumor recurrence, as well as to the extent of joint involvement.1,5

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TGCT—especially its diffuse forms—can be a chronic condition that may result in significant joint damage, debilitating functional impairments, and reduced quality of life.1,6-8

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Reported recurrence rates are highly variable for both subtypes, but are higher for diffuse TGCT as complete surgical removal of these locally aggressive, infiltrative tumors is not always achievable.2,3,5,9-11

Localized TGCT recurrence rates

are estimated to be up to ~15% when the tumor is completely resected.9,14,15

For most patients with localized disease, surgery can be curative.5,12-14

Even upon recurrence, localized tumors usually are not destructive, and recurrent tumors typically are controlled through repeated surgical removal.2

Diffuse TGCT recurrence rates

are estimated to range from about 20% to 50% after surgical resection is attempted.9,11,12

Patients with diffuse TGCT may require multiple surgeries, which can lead to substantial morbidity of the joint and the need for future joint arthroplasty or, in extremely rare cases, amputation.1,7,16

The potentially long-term course of the disease can be associated with loss of joint function and development of early secondary osteoarthritis.6,17

TGCT can take a toll

Partner with your patients to help minimize the impact of recurrent TGCT

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Beyond the implications associated with the risk of functional impairment and the possibility of repeated surgeries, the full impact that TGCT on patients and their daily lives has not been well studied.7

In general, the severity of the physical effects of TGCT is related to subtype (localized or diffuse). However, in one single-center retrospective study, patients with either localized or diffuse tumors scored significantly lower in quality of life–related measures in mental health, vitality, and general health when compared with general population norms. Additionally, patients with diffuse TGCT scored significantly lower in physical functioning.6,a

Understanding the quality of life aspects of TGCT may contribute greatly to counseling discussions with patients7.

Helping your patients understand types of TGCT, management approaches, and related risk of recurrence may help to set their expectations and avoid future surprises that can lead to stress and anxiety.

Working together, you and your patients can make a plan for not only treating their tumors but also for coping with additional challenges presented when living with TGCT.

Understanding their journey

The quotes below highlight the types of challenges faced by some patients with recurrent, diffuse TGCT

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Individual reports from people living with TGCT show that there are changes in how they feel—both physically and emotionally—as well as changes in their daily lifestyles, social lives, work, and recreation.

Their personal accounts exemplify the hardships that some people with TGCT face—especially those with recurrent (often diffuse) TGCT, which is more difficult to treat. These insights may be especially informative for healthcare providers who are new to this rare disease.

The impact of TGCT is different for everyone, and this information is not meant to be reflective of all patients with TGCT.b

Footnote

aBased on results of the 36-item Short-Form Health Survey (SF-36), where patients were identified retrospectively at one center in the Netherlands. The SF-36 was administered to identified patients and collected at varying time points. Patients at this center were mostly referred from other centers (leading to selection bias), and they received a variety of treatments.6

bThe quotes in this section were gathered from market research, and the recruitment strategy included identifying patients through online blogging and website posts. This approach can lead to selection bias.

References

1. Brahmi M, Vinceneux A, Cassier PA. Current systemic treatment options for tenosynovial giant cell tumor/pigmented villonodular synovitis: targeting the CSF1/CSF1R axis. Curr Treat Options Oncol. 2016;17(2):10. doi:10.1007/s11864-015-0385-x.

2. de Saint Aubain Somerhausen N, van de Rijn M. Tenosynovial giant cell tumour, localized type. In: Fletcher CDM, Bridge JA, Hogendoorn PCW, Mertens F, eds. WHO Classification of Tumours of Soft Tissue and Bone. Vol 5. 4th ed. Lyon, France: IARC Press; 2013:100-101.

3. de Saint Aubain Somerhausen N, van de Rijn M. Tenosynovial giant cell tumour, diffuse type. In: Fletcher CDM, Bridge JA, Hogendoorn PCW, Mertens F, eds. WHO Classification of Tumours of Soft Tissue and Bone. Vol 5. 4th ed. Lyon, France: IARC Press; 2013:102-103.

4. Ottaviani S, Ayral X, Dougados M, Gossec L. Pigmented villonodular synovitis: a retrospective single-center study of 122 cases and review of the literature. Semin Arthritis Rheum. 2011;40(6):539-546. doi:10.1016/j.semarthrit.2010.07.005.

5. Palmerini E, Staals EL, Maki RG, et al. Tenosynovial giant cell tumour/pigmented villonodular synovitis: outcome of 294 patients before the era of kinase inhibitors. Eur J Cancer. 2015;51(2):210-217. doi:10.1016/j.ejca.2014.11.001.

6. Verspoor FGM, Zee AAG, Hannink G, van der Geest ICM, Veth RPH, Schreuder HWB. Long-term follow-up results of primary and recurrent pigmented villonodular synovitis. Rheumatology (Oxford). 2014;53(11):2063-2070. doi:10.1093/rheumatology/keu230.

7. Verspoor FGM, van der Geest ICM, Vegt E, Veth RPH, van der Graaf WT, Schreuder HWB. Pigmented villonodular synovitis: current concepts about diagnosis and management. Future Oncol. 2013;9(10):1515-1531. doi:10.2217/FON.13.124.

8. van der Heijden L, Gibbons CLMH, Dijkstra PDS, et al. The management of diffuse-type giant cell tumour (pigmented villonodular synovitis) and giant cell tumour of tendon sheath (nodular tenosynovitis). J Bone Joint Surg Br. 2012;94(7):882-888. doi:10.1302/0301-620X.94B7.28927.

9. Ravi V, Wang W-L, Lewis VO. Treatment of tenosynovial giant cell tumor and pigmented villonodular synovitis. Curr Opin Oncol. 2011;23(4):361-366. doi:10.1097/CCO.0b013e328347e1e3.

10. Lucas DR. Tenosynovial giant cell tumor. Arch Pathol Lab Med. 2012;136(8):901-906. doi:10.5858/arpa.2012-0165-CR.

11. Xie G-P, Jiang N, Liang C-X, et al. Pigmented villonodular synovitis: a retrospective multicenter study of 237 cases. PLOS One. 2015;10(3):e0121451. doi:10.1371/journal.pone.0121451.

12. Gouin F, Noailles T. Localized and diffuse forms of tenosynovial giant cell tumor (formerly giant cell tumor of the tendon sheath and pigmented villonodular synovitis). Orthop Traumatol Surg Res. 2017;103(1S):S91-S97. doi:10.1016/j.otsr.2016.11.002.

13. Rao AS, Vigorita VJ. Pigmented villonodular synovitis (giant-cell tumor of the tendon sheath and synovial membrane): a review of eighty-one cases. J Bone Joint Surg Am. 1984;66(1):76-94.

14. Dines JS, DeBerardino TM, Wells JL, et al. Long-term follow-up of surgically treated localized pigmented villonodular synovitis of the knee. Arthroscopy. 2007;23(9):930-937.

15. Ogilvie-Harris DJ, McLean J, Zarnett ME. Pigmented villonodular synovitis of the knee: the results of total arthroscopic synovectomy, partial, arthroscopic synovectomy, and arthroscopic local excision. J Bone Joint Surg Am. 1992;74(1):119-123.

16. Staals EL, Ferrari S, Donati DM, Palmerini E. Diffuse-type tenosynovial giant cell tumour: current treatment concepts and future perspectives. Eur J Cancer. 2016;63:34-40. doi:10.1016/j.ejca.2016.04.022.

17. Johansson JE, Ajjoub S, Coughlin LP, Wener JA, Cruess RL. Pigmented villonodular synovitis of joints. Clin Orthop Relat Res. 1982;(163):159-166.

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