N Chiannilkulchai1, P Pautier2, C Genestie3, A S Bats4, M C Vacher-Lavenu5, M Devouassoux-Shisheboran6, I Treilleux7, A Floquet8, S Croce9, G Ferron10, E Mery11, C Pomel12, F Penault-Llorca13, C Lefeuvre-Plesse14, S Henno15, E Leblanc16, A S Lemaire17, G Averous18, J E Kurtz19, I Ray-Coquard20. 1. ARCAGY-GINECO, Centre Cancers de la Femme et Recherche Clinique, Paris. 2. Departments of Cancer Medecine. 3. Biopathology, Gustave Roussy, Villejuif. 4. Departments of Gynecological Surgery, Hôpital Européen Georges Pompidou. 5. Pathology, Hôpital Cochin, AP-HP, Faculté deMédecine, Université Paris-Descartes, Paris. 6. Department of Pathology, University Hospital, Lyon. 7. Department of Pathology, Centre Léon-Bérard, Lyon. 8. Departments of Oncology. 9. Pathology, Institut Bergonié, Bordeaux. 10. Departments of Onco-Surgery. 11. Pathology, Institut Claudius Regaud, Toulouse. 12. Departments of Gynecological Surgery. 13. Pathology, Centre Jean Perrin, EA 4677, University of Auvergne, Clermont-Ferrand. 14. Department of Oncology, Centre Eugène Marquis, Rennes. 15. Department of Pathology, University Hospital, Rennes. 16. Departments of Gynecological Oncology. 17. Pathology, Centre Osacar lambret, Lille. 18. Departments of Pathology. 19. Oncology and Hematology, Hôpitaux Universitaires de Strasbourg, Strasbourg. 20. Department of Adult Medical Oncology, Centre Léon-Bérard & University Claude Bernard Lyon I, Lyon, France.
Abstract
BACKGROUND: Rare ovarian tumors represent >20% of all ovarian cancers. Given the rarity of these tumors, natural history, prognostic factors are not clearly identified. The extreme variability of patients (age, histological subtypes, stage) induces multiple and complex therapeutic strategies. METHODS: Since 2011, a national network with a dedicated system for referral, up to 22 regional and three national reference centers (RC) has been supported by the French National Cancer Institute (INCa). The network aims to prospectively monitor the management of rare ovarian tumors and provide an equal access to medical expertise and innovative treatments to all French patients through a dedicated website, www.ovaire-rare.org. RESULTS: Over a 5-year activity, 4612 patients have been included. Patients' inclusions increased from 553 in 2011 to 1202 in 2015. Expert pathology review and patients' files discussion in dedicated multidisciplinary tumor boards increased from 166 cases in 2011 (25%) to 538 (45%) in 2015. Pathology review consistently modified the medical strategy in 5-9% every year. The rate of patients' files discussed in RC similarly increased from 294 (53%) to 789 (66%). An increasing number (357 in 5 years) of gynecologic (non-ovarian) rare tumors were also registered by physicians seeking for pathological or medical advice from expert tumor boards. CONCLUSION: Such a nation-wide organization for rare gynecological tumors has invaluable benefits, not only for patients, but also for epidemiological, clinical and biological research.
BACKGROUND: Rare ovarian tumors represent >20% of all ovarian cancers. Given the rarity of these tumors, natural history, prognostic factors are not clearly identified. The extreme variability of patients (age, histological subtypes, stage) induces multiple and complex therapeutic strategies. METHODS: Since 2011, a national network with a dedicated system for referral, up to 22 regional and three national reference centers (RC) has been supported by the French National Cancer Institute (INCa). The network aims to prospectively monitor the management of rare ovarian tumors and provide an equal access to medical expertise and innovative treatments to all French patients through a dedicated website, www.ovaire-rare.org. RESULTS: Over a 5-year activity, 4612 patients have been included. Patients' inclusions increased from 553 in 2011 to 1202 in 2015. Expert pathology review and patients' files discussion in dedicated multidisciplinary tumor boards increased from 166 cases in 2011 (25%) to 538 (45%) in 2015. Pathology review consistently modified the medical strategy in 5-9% every year. The rate of patients' files discussed in RC similarly increased from 294 (53%) to 789 (66%). An increasing number (357 in 5 years) of gynecologic (non-ovarian) rare tumors were also registered by physicians seeking for pathological or medical advice from expert tumor boards. CONCLUSION: Such a nation-wide organization for rare gynecological tumors has invaluable benefits, not only for patients, but also for epidemiological, clinical and biological research.