and 19 other(s)
Introduction: Rare Ovarian Tumors (ROT) include several histological types: sex cord-stromal tumors (granulosa or Sertoli-Leydig cell tumor) germ cell tumors, serous borderline tumor with invasive implants, mucinous borderline or invasive carcinoma clear cell carcinoma, carcinosarcoma. They represent more than 20% of all ovarian cancer. One of the major issues is to recognize these tumors and not to underestimate the fair value of incidence as no systematic review is proposed at the international level. Methods: The French National Network dedicated to Rare Ovarian Malignant Tumors (ROMT) is organized with 3 national and 22 regional expert centers. It has been supported by the French National cancer Institute (INCa). One of the major goals is to exhaustively register patients with rare ovarian cancer. We focus this sub study on the activities of the French network of ROMT from its beginning in 2011 to 2015, and this epidemiologic information in a region where a general registry is performing registration on a population-base, from 1995 to 2015. Doubs represents 1% of the French population. We compared the capability to consider this network able to report strong data for incidence as all patients were systematically reviewed for histology. We analyzed data of the French network website and data of population-based cancer registry in Doubs (a French region): histology type, age, and pathologic review. Results: In the national network from 2011 to 2015 there was a yearly progression of patients inclusion; in the Doubs region from 2011 to 2015 45 patients have been already recruited. In the Doubs cancer registry from 1995 to 2015, there were 211 patients with ROMT. Since 2011, number of patients with ROMT registered was quite similar between the two different approaches. However patient data from the cancer registry reported an oldest population compared to those from the national network. All tumors of patients of the French network were reviewed by one of the onco-gynecological pathologist network referees, whereas it was uncommon for tumors of the population-based cancer registry. Moreover the distribution among histologies of ROMT is different: in the French network website, sex cord-stromal tumor constituted 21% of malignant ROLT (2nd larger group after borderline tumor). In Doubs cancer registry, the mucinous tumors were the most frequent. Conclusion: The French national network provides medical advices, guidelines dedicated to rare ovarian tumor which are helpful for doctors, patients, families and health systems, to develop research and collaborative projects and international cooperation. Combination of two approaches French network and cancer registry provides realistic incidence of rare tumors.
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