Expression VIII: Final Results of the Individual Perception and Level of Information of Patients with Borderline Tumors of the Ovary
by
,
Sara Alavi-Demirci
1,2,†, 
Laura N. Beckmann
1,†,
Hannah Woopen
1,2,
Clemens Liebrich
3,
Yasemine Virk
2,
Pauline Wimberger
4,
Karol Kubiak
5,
Anette Ligl-Löhner
6,
Hans-Martin Enzinger
7,
Vera Czolk
8,
Georg Kunz
9,
Mandy Mangler
10,
Tilmann Lantzsch
11,
Alexander Mustea
12,
Susanne Fechner
13,
Aline Burdack
14,
Jürgen Terhaag
15,
Dorothea Fischer
16,
Cornelia Müller
17 and
Jalid Sehouli
1,2,* 1
Charité–University Medical Center Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Department of Gynecology, European Competence Center for Ovarian Cancer, 13353 Berlin, Germany
2
North-Eastern German Society of Gynecological Oncology (NOGGO e.V.), 13359 Berlin, Germany
3
Department of Obstetrics and Gynecology, Klinikum Wolfsburg, 38440 Wolfsburg, Germany
4
Department of Gynecology and Obstetrics, Medical Faculty, University Hospital Carl Gustav Carus, Technische Universität Dresden, 01307 Dresden, Germany
5
Department of Gynecology and Obstetrics, St. Franziskus Hospital Münster, 48145 Münster, Germany
6
Department of Gynecology and Obstetrics, Diakonissen-Stiftungs-Krankenhaus Speyer, 67346 Speyer, Germany
7
Department of Gynecology, Frauenklinik am Klinikum am Bruderwald, Sozialstiftung Bamberg, 96049 Bamberg, Germany
8
Department of Gynecology and Obstetrics, Brüderklinikum Julia Lanz, 68163 Mannheim, Germany
9
Department of Gynecology and Obstetrics, St. Johannes Hospital Dortmund, 44137 Dortmund, Germany
10
Department for Obstetrics and Gynecology, Auguste-Viktora-Krankenhaus Vivantes, 12157 Berlin, Germany
11
Department of Gynecology, Hospital St. Elisabeth and St. Barbara, 06110 Halle (Saale), Germany
12
Department of Gynaecology and Gynaecological Oncology, University Medical Center Bonn (UKB), 53127 Bonn, Germany
13
German Ovarian Cancer Foundation, 13359 Berlin, Germany
14
Department of Gynecology and Obstetrics, Sana-Clinics Berlin Lichtenberg, 10365 Berlin, Germany
15
Department of Gynecology and Obstetrics, Rottal Inn Kliniken, 84307 Eggenfelden, Germany
16
Department of Obstetrics and Gynaecology, Ernst von Bergmann Clinic, 14467 Potsdam, Germany
17
Department of Gynaecology and Obstetrics, Brandenburg Medical School Theodor Fontane, University Clinic Brandenburg, 14770 Brandenburg an der Havel, Germany
*
Author to whom correspondence should be addressed.
†
These authors contributed equally to this work.
Curr. Oncol. 2026, 33(9), 516; https://doi.org/10.3390/curroncol33090516
Submission received: 29 April 2026
/
Revised: 29 June 2026
/
Accepted: 24 August 2026
/
Published: 28 August 2026
(This article belongs to the Section Gynecologic Oncology)
Simple Summary
Borderline ovarian tumors (BOTs) are rare epithelial ovarian neoplasms predominantly affecting younger women and generally associated with an excellent prognosis. Despite their favorable biology, many patients overestimate the malignant potential and recurrence risk of the disease. In this national multicenter survey of 286 women, most participants reported high satisfaction with physician-provided information, yet substantial knowledge gaps persisted regarding tumor type, stage, and prognosis. Variations in reported treatment and surgical approaches suggest ongoing uncertainty in clinical management. These findings underscore the importance of improved patient education, consistent implementation of guideline-based care, and management in specialized gynecologic oncology centers.
Abstract
Background: Borderline ovarian tumors (BOTs) represent a distinct group of rare epithelial ovarian neoplasms with excellent prognosis, but persistent uncertainty in patient understanding and clinical management. This study evaluated disease awareness, perceptions, and treatment patterns among affected women in Germany. Methods: The national multicenter Expression VIII survey was conducted across 34 centers by the North-Eastern German Society of Gynecologic Oncology (NOGGO). Using a standardized 46-item questionnaire, 286 patients with BOTs provided data on symptoms, treatment, fertility, follow-up, and illness perception. Descriptive analyses were performed. Results: Most participants (mean age 51 years) underwent surgery (94%), while systemic therapy was infrequent (chemotherapy 9%, bevacizumab 4%). Fertility-sparing surgery was performed in 14% overall, corresponding to 71% of those desiring future childbearing. Although 81% identified their physician as their main information source and rated information quality highly (mean 8.6/10), 29% believed they had ovarian cancer and 64% were unaware of their tumor stage. Nearly all patients (97%) received regular follow-up, though 18% were uncertain about the procedures performed. Disease severity was rated moderately high (mean 5.4/10), and recurrence risk and mortality were often overestimated. Conclusions: Despite good overall physician communication, substantial misconceptions persist among patients with BOTs, including the mistaken belief that they have been diagnosed with cancer, suggesting a need for clearer, structured education about its favorable prognosis and management of the disease. Improved guideline adherence and treatment centralization in specialized centers may reduce overtreatment and optimize fertility-preserving approaches.
