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Kidess, Marc; Hentrich, Marcus; Aschl, Franz; Chernova, Oksana; Beckstein, Sebastian; Bojko, Peter; Schulz, Sebastian; Neitz, Julia; Hermans, Julian; Volz, Yannic; Ebner, Benedikt; Keller, Patrick; Apfelbeck, Maria; Marcon, Julian; Weinhold, Philipp; Stief, Christian G.; Eismann, Lennert; Chaloupka, Michael (2026): Primary extragonadal germ cell tumours: Real‐world data from a high‐volume centre. BJUI Compass, 7 (4): e70202. ISSN 2688-4526

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BJUI_Compass_-_2026_-_Kidess_-_Primary_extragonadal_germ_cell_tumours__Real‐world_data_from_a_high‐volume_centre.pdf

Abstract

Objectives:
To provide improved evidence for treatment recommendations, this study analysed real-world data on the characteristics, treatment and prognosis of primary extragonadal germ cell tumours (EGCTs), a very rare cancer entity that shares histological features with testicular GCTs (TGCT).

Materials and methods:
This retrospective study analysed data from 34 patients with mediastinal or retroperitoneal EGCTs treated at a high-volume centre between 2015 and 2025. Probability of overall survival (OS) and relapse-free survival (RFS) was assessed using Kaplan–Meier curves.

Results:
A primary retroperitoneal and primary mediastinal GCT was diagnosed in 23 (68%) and 11 (32%) patients, respectively. Median patient age was 41.1 years, and 62% were non-seminomatous in origin. Thirty-three (97%) patients received chemotherapy according to the IGCCCG prognostic group, and 15 (44%) underwent surgical intervention (4 primary RPLND, 8 post-chemotherapy RPLND, 3 secondary orchiectomy). Thirteen patients (44.9%) who completed chemotherapy experienced a relapse after a median of 0.79 years, and six of them died. In patients with primary mediastinal seminoma, 3-year RFS and OS were 100% as compared to 71% 3-year OS in patients with primary retroperitoneal non-seminoma and 46% 3-year RFS in patients with primary mediastinal non-seminoma.

Conclusion:
The prognosis for primary mediastinal seminoma appears favourable, while non-seminomatous EGCT shows poorer outcomes. Additionally, primary retroperitoneal seminomas demonstrate promising survival rates, whereas primary retroperitoneal non-seminomas demonstrate the lowest OS rates.

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