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Cancer in Norway 2009 Cancer in Norway 2009 Cancer incidence, mortality, survival and prevalence in Norway Special issue: Cancer screening in Norway Cancer in Norway 2009 Editor-in-chief: Inger Kristin Larsen Analysis: Bjørge Sæther, Bjarte Aagnes Layout and design: Inger Johanne Rein Correspondence to: Inger Kristin Larsen - [email protected] Editorial team: Inger Kristin Larsen, Tom K Grimsrud, Tor Haldorsen, Tom Børge Johannesen, Aage Johansen, Hilde Langseth, Siri Larønningen, Jan Ivar Martinsen, Christine Mellem, Bjørn Møller, Jan F Nygård, Inger Johanne Rein, Bjørge Sæther, Ragnhild Sørum, Svein Erling Tysvær, Bjarte Aagnes, Giske Ursin Recommended reference: Cancer Registry of Norway. Cancer Registry of Norway. Cancer in Norway 2009 - Cancer incidence, mortality, survival and prevalence in Norway. Oslo: Cancer Registry of Norway, 2011. Special issue: Cancer screening in Norway Editor: Tor Haldorsen Writing group: Tor Haldorsen, Geir Hoff, Solveig Hofvind, Ole-Erik Iversen, Rune Kvåle, Bente Kristin Johansen and Mari Nygård Layout and design: Inger Johanne Rein Linguistic assistance: Barbara Mortensen Correspondence to: Tor Haldorsen - [email protected] Recommended reference: Cancer in Norway 2009. Special issue: Cancer screening in Norway (Haldorsen T., ed) Oslo: Cancer Registry of Norway, 2011 ISBN: 978-82-90343-76-0 ISSN: 0332-9631 General requests for cancer information, data or possible research collaborations are welcome, and should be sent to [email protected] Cancer in Norway 2009 Cancer incidence, mortality, survival and prevalence in Norway Special issue: Cancer screening in Norway 3 Foreword The Cancer Registry of Norway has collected and compiled data on cancer occurrence since the early 1950s. Up to date statistics as well as trends over time are presented annually in this Cancer in Norway (CiN) publication. CiN represents a coordinated effort by dedicated staff consisting of cancer coders and an editorial team which ensures that statistics are clearly presented. I would like to thank all of our coders, their leaders, members of the IT staff and all of the physicians who have contributed admirably to this achievement. A special thank you goes to Inger Kristin Larsen, Bjørn Møller, Inger Johanne Rein, Bjørge Sæther and Bjarte Aagnes who have compiled the final report, and to all other staff members at the Cancer Registry who have proofread the report or contributed in some other way. Cancer coding is a complex task which requires a substantial amount of knowledge, not only about cancer codes and coding rules, but also about the natural history of cancer. The Cancer Registry receives reports not only from pathology laboratories, but also from clinicians, the National Cause of Death Registry and, since 2008, the National Patient Registry (NPR). More than 200 000 notifications are received annually. The redundancy in reporting ensures that the Registry´s records become more complete. The coders´ knowledge and efforts ensure that the records are as accurate as possible. In 2010 the Cancer Registry changed a number of routines relating to the coding process. Although the Registry still receives case notifications by post, these paper forms are scanned and the patients’ identities masked upon receipt. Further in house management and coding is electronic. Another change in 2010 was related to the clinical registries. These were originally set up as independent databases, but several of them have now become electronically integrated with the incidence registry. This reorganization will ultimately improve efficiency, but has caused a delay in publication of CiN 2009. Every year there is a demand on the Cancer Registry to code additional variables and provide more information, also on the treatment and follow-up of cancer, i.e. by expanding the number of clinical registries. This is important, and our staff members and clinical colleagues throughout the country who participate in the various expert groups do a tremendous job in further developing these clinical registries. However, to satisfy this growing demand, the reporting will need to become increasingly electronic. Every year CiN includes a Special Issue. This year´s special issue focuses on screening for cancer. My thanks goes to everyone who contributed to these articles, and in particular to the special issue editor, Tor Haldorsen. The Cancer Registry runs two national screening programmes, the breast cancer programme and the cervical cancer screening programme. Both of these programmes are described, as well as the rationale for initiating a screening programme for colorectal cancer. The special issue also discusses screening for other types of cancers, and in particular for prostate cancer. These issues have considerable public health implications. The question is not just whether the government should implement new national screening programmes, but whether the effort will save lives and reduce suffering from cancer. Having no national screening programme does not imply that no screening takes place. It simply means that only some individuals will be screened, typically those with higher education or high income, and those who are particularly health conscious. The individuals who undergo screening 4 will then not necessarily be those who develop cancer. Consequently, opportunistic screening without a national screening programme can be inefficient and not very cost-effective. The cervical cancer screening programme is a good example of the benefits of organized screening. The total number of cytological smears was reduced considerably in Norway after the cervical cancer screening programme was introduced. The breast cancer and the cervical cancer screening programmes have yet to be formally evaluated. Such evaluations should be done on individual based data, as studies based on aggregate data have been shown to underestimate the beneficial effects of screening. Preliminary results from both programmes suggest that they are indeed on target, but formal evaluations will be useful. As we learn more about the effects these two established screening programmes have had on incidence (of cervical cancer) and mortality (of both cancers), the main question that should be kept in mind is not whether we should screen or not, but how we can improve the screening programmes. How can we use the screening programmes to better identify and differentially treat the aggressive cancers, and at the same time minimize treatment for cancers that grow slowly? To answer this question, a rethinking of the screening programmes based on available scientific evidence is needed. We will also need to conduct further research in collaboration with our clinical and basic science colleagues as well as the dedicated screening programme staff throughout the country, in order to make our screening programmes even better. On behalf of all the staff at the Cancer Registry, I would like to sincerely thank Dr. Frøydis Langmark, who retired on January 4, 2011, for her continued influence and leadership during 27 years as director of the Cancer Registry. During this period, the Registry developed from a small group of 20-30 physicians, coders and researchers to an institution with more than 130 employees. Dr. Langmark has been a front figure in the Norwegian cancer arena, securing the Registry’s national and international reputation, and for that we are all grateful. Since the beginning of the Cancer Registry, cancer incidence has increased substantially. Because of advances in diagnostics, screening and treatment, survival from cancer has improved, but cancer will remain an important public health problem in the foreseeable future. We hope that this publication will be useful for everyone working towards improvements in cancer prevention and treatment. Oslo, June 2011 Giske Ursin Director 5 Table of contents Cancer in Norway 2009 Foreword.................................................................................................................................................. 4 Sammendrag........................................................................................................................................... 8 Definitions.............................................................................................................................................. 10 Data Sources and Methods................................................................................................................. 11 The population of Norway.................................................................................................................... 11 Data sources and registration routines .............................................................................................. 12 Data items registered in the Cancer Registry of Norway................................................................. 12 Registries................................................................................................................................................ 12 Notifications and sources of information.......................................................................................... 12 Dispatching of reminders.................................................................................................................... 13 Incidence and mortality data.............................................................................................................. 14 Follow-up data......................................................................................................................................
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