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The Desmoid Tumor Research Foundation

November 2014

Management of sporadic desmoid-type fibromatosis: A European consensus approach based on patients’ and professionals’ expertise – A Sarcoma Patients EuroNet and European Organisation for Research and Treatment of Cancer/Soft Tissue and Bone Sarcoma Group initiative.

Author Information

A Gronchi,B Kasper,C Baumgarten,F Haller,G Moreau,P Hohenberger,R Haas,S Bonvalot,W T A van der Graaf

DTRF was one of the Patient Advocacy GroupsDepartment of Medical Oncology, Radboud University Medical Centre, Geert Grooteplein 8, Nijmegen 6525 GA, The Netherlands.,Department of Radiotherapy, The Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands.,Department of Surgery, Fondazione IRCCS Istituto Nazionale dei Tumori, via G. Venezian 1, 20133Milan, Italy.,Department of Surgical Oncology, Gustave Roussy, 114 rue Edouard Vaillant, 94805 Villejuif Cedex, France.,Institute of Pathology, Friedrich Alexander University Erlangen, Krankenhausstraße 12, 91054 Erlangen, Germany.,Sarcoma Unit, Interdisciplinary Tumor Center, Mannheim University Medical Center, University of Heidelberg, Theodor-Kutzer-Ufer 1-3, 68167 Mannheim, Germany.,Sarcoma Unit, Interdisciplinary Tumor Center, Mannheim University Medical Center, University of Heidelberg, Theodor-Kutzer-Ufer 1-3, 68167 Mannheim, Germany. Electronic address:bernd.kasper@umm.de.,SOS Desmoide, 45, rue René La Combe, 49100 Angers, France.,SPAEN Sarcoma Patients EuroNet e.V., Untergasse 36, 61200 Wölfersheim, Germany.

Publication

Summary

Desmoid-type fibromatosis (DF) is a rare monoclonal, fibroblastic proliferation characterised by a variable and often unpredictable clinical course. It may affect nearly all parts of the body including extremities, trunk and abdomen. Considering the variable clinical presentations, anatomic locations and biological behaviours, an individualised treatment approach is required. No established or evidence-based approach for the treatment of this neoplasm is available as of today. Therefore, we propose a consensus treatment algorithm based on a round table meeting bringing together sarcoma experts from the European Organisation for Research and Treatment of Cancer (EORTC) Soft Tissue and Bone Sarcoma Group (STBSG) withpatient advocatesfrom Sarcoma Patients EuroNet (SPAEN). The aim of the meeting was to develop - for the first time ever - a consensus approach based on professionals' AND patients' expertise. As a fundamental prerequisite, all patients should be discussed in a multidisciplinary setting in centres or professional networks with a specific expertise in the disease.

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