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Risk-Reducing Gynecological Surgery in Lynch Syndrome: Results of an International Survey from the Prospective Lynch Syndrome Database

1
Department of Tumor Biology, Institute of Cancer Research, The Norwegian Radium Hospital, Part of Oslo University Hospital, 0379 Oslo, Norway
2
Department of Abdominal Surgery, Helsinki University Central Hospital, 00029 Helsinki, Finland
3
Faculty of Medicine, University of Helsinki, 00014 Helsinki, Finland
4
Institute for Medical Informatics, Statistics and Epidemiology, University of Leipzig, 04107 Leipzig, Germany
5
Institute of Human Genetics, University of Bonn, 53127 Bonn, Germany
6
Center for Hereditary Tumor Syndromes, University Hospital Bonn, 53127 Bonn, Germany
7
Colorectal Medicine and Genetics, The Royal Melbourne Hospital, 3052 Melbourne, Australia
8
Department of Medicine, University of Melbourne, 3052 Melbourne, Australia
9
Hereditary Cancer Program, Catalan Institute of Oncology, Insititut d’Investigació Biomèdica de Bellvitge (IDIBELL), ONCOBELL Program, L’Hospitalet de Llobregat, 08908 Barcelona, Spain
10
Centro de Investigación Biomédica en Red de Cáncer (CIBERONC), 28029 Madrid, Spain
11
Department of Surgery and Cancer, St Mark’s Hospital, Imperial College London, London HA1 3UJ, UK
12
Center for Bioinformatics, Department of Informatics, University of Oslo, 0316 Oslo, Norway
13
Leids Universitair Medisch Centrum, Department of Clinical Genetics, 2300RC Leiden, The Netherlands
14
Department of Genetics, University of Groningen, University Medical Center Groningen, 9713GZ Groningen, The Netherlands
15
Scientific Consultant of the Division of Prevention and Genetic Oncology, European Institute of Oncology, Fondazione IRCCS Isrtituto nazionale dei Tumori, 20141 Milan, Italy
16
Division of Prevention and Genetic Oncology, European Institute of Oncology, 20141 Milan, Italy
17
Ospedale di Circolo ASST Settelaghi, Centro di Ricerca Tumori Eredo-Familiari, Università dell’Insubria, 21100 Varese, Italy
18
Gastroenterology and Gastrointestinal Endoscopy Unit, Vita-Salute San Raffaele University, San Raffaele Scientific Institute, 20132 Milan, Italy
19
Karolinska Institutet, 171 76 Stockholm, Sweden
20
Department of Gastroenterology, Tel-Aviv Sourasky Medical Center and Sackler Faculty of Medicine, Tel-Aviv University, 64239 Tel Aviv, Israel
21
Department of Gastroenterology and Hepatology, Hadassah Medical Center, 91120 Jerusalem, Israel
22
Medical Genetics, Institute for Medical Genetics and Pathology, University Hospital Basel, 4031 Basel, Switzerland
23
Hereditary Cancer Program (PROCANHE) Hospital Italiano de Buenos Aires, C1199ABB Ciudad Autónoma de Buenos Aires, Argentina
24
University of Manchester & Manchester University NHS Foundation Trust, Manchester M13 9WL, UK
25
Department of Surgery, Manchester University NHS Foundation Trust and University of Manchester, Manchester M13 9WL, UK
26
Department of Medicine, Knappschaftskrankenhaus, Ruhr-University Bochum, 44801 Bochum, Germany
27
Department of Medicine, Knappschaftskrankenhaus, Ruhr-University Bochum, 44892 Bochum, Germany
28
Department of Gynecology, University Clinics, Martin-Luther University, D-06097 Halle (Saale), Germany
29
Institute of Human Genetics, Hannover Medical School, 30625 Hannover, Germany
30
Medizinische Klinik und Poliklinik IV, Campus Innenstadt, Klinikum der Universität München, 80336 Munich, Germany
31
MGZ-Medical Genetics Center, 80335 Munich, Germany
32
Faculty of Sport and Health Sciences, University of Jyväskylä, 40014 Jyväskylä, Finland
33
Department of Surgery, Central Finland Health Care District, 40620 Jyväskylä, Finland
34
Institute of Medical Genetics, Division of Cancer and Genetics, Cardiff University School of Medicine, Cardiff CF14 4XN, UK
*
Authors to whom correspondence should be addressed.
These authors contributed equally.
J. Clin. Med. 2020, 9(7), 2290; https://doi.org/10.3390/jcm9072290
Received: 25 May 2020 / Revised: 5 July 2020 / Accepted: 8 July 2020 / Published: 18 July 2020
(This article belongs to the Special Issue Genetic Epidemiology of Inherited Cancers)
Purpose: To survey risk-reducing hysterectomy and bilateral salpingo-oophorectomy (BSO) practice and advice regarding hormone replacement therapy (HRT) in women with Lynch syndrome. Methods: We conducted a survey in 31 contributing centers from the Prospective Lynch Syndrome Database (PLSD), which incorporates 18 countries worldwide. The survey covered local policies for risk-reducing hysterectomy and BSO in Lynch syndrome, the timing when these measures are offered, the involvement of stakeholders and advice regarding HRT. Results: Risk-reducing hysterectomy and BSO are offered to path_MLH1 and path_MSH2 carriers in 20/21 (95%) contributing centers, to path_MSH6 carriers in 19/21 (91%) and to path_PMS2 carriers in 14/21 (67%). Regarding the involvement of stakeholders, there is global agreement (~90%) that risk-reducing surgery should be offered to women, and that this discussion may involve gynecologists, genetic counselors and/or medical geneticists. Prescription of estrogen-only HRT is offered by 15/21 (71%) centers to women of variable age range (35–55 years). Conclusions: Most centers offer risk-reducing gynecological surgery to carriers of path_MLH1, path_MSH2 and path_MSH6 variants but less so for path_PMS2 carriers. There is wide variation in how, when and to whom this is offered. The Manchester International Consensus Group developed recommendations to harmonize clinical practice across centers, but there is a clear need for more research. View Full-Text
Keywords: Lynch syndrome; endometrial cancer; ovarian cancer; risk-reducing surgery Lynch syndrome; endometrial cancer; ovarian cancer; risk-reducing surgery
MDPI and ACS Style

Dominguez-Valentin, M.; Seppälä, T.T.; Engel, C.; Aretz, S.; Macrae, F.; Winship, I.; Capella, G.; Thomas, H.; Hovig, E.; Nielsen, M.; Sijmons, R.H.; Bertario, L.; Bonanni, B.; Tibiletti, M.G.; Cavestro, G.M.; Mints, M.; Gluck, N.; Katz, L.; Heinimann, K.; Vaccaro, C.A.; Green, K.; Lalloo, F.; Hill, J.; Schmiegel, W.; Vangala, D.; Perne, C.; Strauß, H.-G.; Tecklenburg, J.; Holinski-Feder, E.; Steinke-Lange, V.; Mecklin, J.-P.; Plazzer, J.-P.; Pineda, M.; Navarro, M.; Vidal, J.B.; Kariv, R.; Rosner, G.; Piñero, T.A.; Gonzalez, M.L.; Kalfayan, P.; Sampson, J.R.; Ryan, N.A.J.; Evans, D.G.; Møller, P.; Crosbie, E.J. Risk-Reducing Gynecological Surgery in Lynch Syndrome: Results of an International Survey from the Prospective Lynch Syndrome Database. J. Clin. Med. 2020, 9, 2290.

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