Manual for Cancer Registry Personnel Edited by D. Esteban, S. Whelan, A. Laudico and D.M. Parkin In collaboration with D. Badger, S. Gravestock and A.L. Maya IARC Technical Report No. 10 Lyon, 1995 Published by the International Agency for Research on Cancer, 150 cours Albert Thomas, F-69372 Lyon cédex 08, France © international Agency for Research on Cancer, 1995 Distributed by IARCPress (Fax: +33 72 73 83 02; E-mail: [email protected]) and by the World Health Organization Distribution and Sales, CH-1211 Geneva 27 (Fax: +41 22 791 4857) Publications of the World Health Organization enjoy copyright protection in accordance with the provisions of Protocol 2 of the Universal Copyright Convention. All rights reserved. The designations used and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the Secretariat of the World Health Organization concerning the legal status of any country, territory, city, or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. The mention of specific companies or of certain manufacturers products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. The authors alone are responsible for the views expressed in this publication. The International Agency for Research on Cancer welcomes requests for permission to reproduce or translate its publications, in part or in full. Applications and enquiries should be addressed to the Editorial & Publications Service, International Agency for Research on Cancer, which will be glad to provide the latest information on any changes made to the text, plans for new editions, and reprints and translations already available. IARC Library Cataloguing in Publication Data ISBN 92 832 1424 2 Manual for Cancer Registry Personnel (1995: Lyon, France) editors, D. Esteban ... [et. al.] (IARC Technical Reports; 10) 1. Data Collection - handbooks 2. Data Collection - methods 3. Registries - handbooks 4. Registries - methods I. Esteban, D. Il. Series ISBN 92 832 1424 2 (NLM Classification: QZ 39) Produced in France EDITORS' AND COLLABORATORS' ADDRESSES Dr Divina Esteban Ms Diane Badger Rizal Cancer Registry Statistics Canada Department of Health Rizal Medical Centre R.H. Coats Building Pasig Boulevard, Pasig Tunney's Pasture Metro Manila 1600 Ottawa, Ontario K1A 0T6 Philippines Canada Ms Sharon L. Whelan and Dr D.M. Parkin Ms Sandra Gravestock International Agency for Research on Cancer Mersey & Cheshire Cancer Registry 150 cours Albert Thomas 2nd Floor, Muspratt Building 69372 Lyon Cedex 08 University of Liverpool France P0 Box 147 Liverpool L69 3BX Dr A. Laudico United Kingdom Manila Cancer Registry Philippine Cancer Society Ms Alba Lucia Maya 310 San Rafael Florida Tumor Registrars Association P0 Box 3066 North Shore Medical Center Inc. Manila 1005 1100 N.W. 95 Street Philippines Miami, Florida 33150 USA The editors and their collaborators gratefully acknowledge the permission of the following to draw upon or to reproduce their published material: American Joint Committee on Cancer, 55 East Erie Street, Chicago, Illinois 60611, USA, for the Manual for Staging of Cancer (Third Edition) Margaret Boyd, formerly of the Provincial Cancer Hospitals Board, Edmonton, Alberta, Canada and the Misericordia Hospital, Edmonton, Alberta, Canada, for the Medical Terminology Course Evelyn Shambaugh of the Surveillance, Epidemiology and End Results (SEER) Program, Executive Plaza North, Bethesda, Maryland 20892, USA, for the chapter on Data Presentation Statistics Canada, Health Statistics Division, R.H. Coats Building, Tunney's Pasture, Ottawa, Ontario K1A OT6, Canada, for the Manual for Cancer Records Officers Surveillance, Epidemiology and End Results (SEER) Program, Executive Plaza North, Bethesda, Maryland 20892, USA, for the SEER Self Instructional Manual for Tumor Registrars 11 Contents Chapter 1 Introduction ................................................... 1.1 Chapter 2 The diagnosis and treatment of cancer ............................... 2.1 Appendix 2.1 Acronyms and abbreviations...................................... 2.28 Appendix 2.2 Symbols...................................................... 2.47 Appendix 2.3 Cancer chemotherapeutic agents................................... 2.48 Chapter 3 Data Collection ................................................. 3.1 Appendix 3.1 Reportable list ................................................. 3.52 Chapter 4 Coding........................................................ 4.1 Appendix 4.1 Summary staging guide .......................................... 4.32 Appendix 4.2 Instructions for abstracting extent of disease and diagnostic procedures .... 4.67 Appendix 4.3 Definitions of anatomical sites according to the manual for Staging of cancer of the American Joint Committee on Cancer Staging.............. 4.76 Chapter 5 In-put procedures ............................................... 5.1 Chapter 6 Quality control .................................................. 6.1 Chapter 7 Data presentation ............................................... 7.1 Chapter 8 Confidentiality of medical records .................................. 8.1 Chapter 9 Medical Terminology Course....................................... 9.1 Chapter 10 Bibliography .................................................. 10.1 Index............................................................... 11.1 1 Introduction The need for data on cancer lation, in order to understand and so control the impact of cancer in that population. Analysis of the data collected will show how It has been estimated that in 1985 there many cancers there are, and which types are were 7.6 million new cancer cases in the the most frequent. This will permit studies world, 52% of which occurred in the to identify the causes of cancer, and at the developing countries (Parkin et al., 1993). same time the registry data can be used to The burden of cancer will increase very evaluate the effect of screening programmes rapidly in the next few years, largely due to or other activities designed to reduce cancer an increasing proportion of elderly people in incidence in the population, as well as to most countries. In the year 2000, there will study the effect of early diagnosis and of be some 10.5 million new cases, and nearly treatment. The cancer registry data can also six million of these will occur in the be used to plan requirements for the per- developing world. Cancer, which has long sonnel, medical facilities and equipment been a major problem in the more needed for the diagnosis and treatment of developed countries, is now a major public the cancer patient. health problem in all countries. In order to undertake any programme of cancer control, it is necessary to understand the burden of cancer in a community. Can- The cancer registry cer is not a single disease, it is a term which describes many different diseases. It is not A registry is simply a place where registers or sufficient to know the total number of can- records of, for example, births, marnages cers in a population, because patterns of and deaths are kept. There are many dif- occurrence vary widely between geographical ferent types of registry or register, there are areas, between ethnic groups, by socio- registries which record information on ill- economic categories, by occupation and by a nesses other than cancer, and there are wide variety of cultural factors. So data on several types of cancer registry. cancer have to show the distribution of the The hospital cancer registry is concerned with different types of cancer in a population. cancer patients from the hospital in which it Once the baseline data are established it is operates, or the group of hospitals for which it possible to search for the aetiological or has responsibility. It has a primarily clinical causative agents, and establish appropriate function, and the data produced are used to interventions to prevent the cancers from assess the medical care given to the cancer developing. Examples of activities to pre- patient, to improve treatment regimes, and to vent cancer are screening programmes, follow the patient to ensure that check-up notably for cancer of the cervix (this is visits are made regularly. The data recorded called secondary prevention, because it pre- will include extensive clinical information vents cancer from developing by removing which would not normally be collected by a it at an early stage), and education about the population-based cancer registry, for example ill-effects of tobacco or the benefits of heal- on diagnostic procedures and courses of thy eating (primary prevention to stop the therapy. The hospital registry does not dis- cancer occurring at all). tinguish between residents and non-residents The role of the population-based cancer in an area, but collects information on all registry is to collect the data which will give patients in the hospital irrespective of where an accurate picture of cancer in a popu- they come from. 1 2 Manual for Cancer Registry Personnel The pathology registry collects all patho- data in the cancer registry. The quality of logical or histological diagnoses made in a the data, with some indicators to show how laboratory, and data from such registries it can be monitored, is discussed in Chapter have been