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
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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 used to calculate minimum inci- 6. Once the data have been collected, coded dence data for areas where no other and put together it is important to use all information has been available. Again, no this information. Chapter 7 gives a des- distinction is made between residents of the cription of how data can be analysed and area and those who come from elsewhere. presented in the form of tables and graphs. This type of registry will not have complete Chapter 8 stresses the need for confiden- information, because all cases diagnosed tiality in the cancer registry and suggests clinically or by a technique other than methods of ensuring that the data are kept pathology will not come to the attention of secure. the registry, but the quality of the data will The manual has been designed for anybody be very good. who comes to work in a registry. You may The population-based cancer registry (also have medical training, in which case it will called a tumoui registry) aims to collect not be necessary to study the section at the information on every case of cancer occur- end entitled Medical Terminology Course. ring in a defined population. In order to We know that many of the people working accomplish this task, a dearly delimited in cancer registries do not have medical geographical area must be decided and training, and we hope that this section will accurate data on the population living in be of help. It is designed to help you under- this area acquired. Every effort must be stand human physiology and the terms made to exclude patients who do not live in which you will come across in the medical the designated area from the incidence data. records. It is essential to cover every potential source The emphasis throughout is on active of data for residents of the area. registration. This manual is primarily designed to help people operating cancer registries in developing countries, where it is The manual not possible to rely on routine notifications and it is necessary to go out and actively search for information on cases in the This manual has been prepared to help hospitals. people working in population-based cancer The format is loose-leaf, so that additional registries. The different chapters follow the material can be added by you and so that order of the tasks which have to be separate chapters can be replaced and performed by the registry personnel, updated from time to time. starting, in Chapter 2, with learning how to recognise the medical vocabulary used to The Manual is intended as a complement to describe the symptoms, the diagnosis and the book Cancer Registration: Principles the treatment of cancer. Chapter 3 intro- and Methods (Jensen et al., 1991), which duces the different sources from which describes the steps involved in planning and information may be found, concentrating operating a population-based registry. You on the various hospital departments where should be familiar with the contents of this it is likely that cancer patients may have book, and you can also use it as a resource if been diagnosed or treated, and presents the you wish to have additional information on type of data which you should be looking how to report the results of the registry and for and how to record it. statistical methods. Once the information has been located and collected, the data have to be put into a Acknowledgements coded format. The items which are used to produce statistics on cancer incidence are The editors are greatly indebted to Margot the site and the type of cancer, and Chapter Geesink, Françoise Petit and Aira Romanoff 4 gives instructions on how to code the for all their work in putting this manuscript medical diagnosis. Chapter 5 follows the together, and to Josephine Thevenoux who steps involved in the management of the prepared the text for the printer. 2 The Diagnosis and Treatment of Cancer
In the day-to-day operations of the registry, ing) .-algia which is derived from the Greek the cancer registry personnel deal mostly with word algo (pain). Thus arthralgia means pain cases of cancer. They will encounter various in the joint. terms that refer to symptoms or signs of the The root, also known as stem, of a medical illness, describe the tumour and refer to the term is usually the main part of the word and site of origin, as well as the methods and refers to the organ or place where the illness results of diagnosis and treatment. It is not originated. It is generally derived from a Greek necessary to know the exact definition of all or Latin noun or verb. The root may be found: these terms, but the worker should be able to - at the beginning, as in: osteoma, decide whether they relate to the diagnosis or lingual, leukaemia treatment of cancer, or whether they are used - in the middle: intercostal, hyper- to describe the site or type of the tumour. This chromatic, prognosis chapter provides general information on symptoms of cancer, methods of detection - at the end: anuria, neoplasm, and forms of treatment. Common medical hypogastric, mesoderm terms are presented and defined. The Medical The meaning of a medical term is modified by Terminology Course at the end of this manual the addition of a prefix (at the beginning) or a should also be studied. suffix (at the end). The prefix is often a preposition or an adverb 2.1 and it consists of one or two syllables added in Medical terminology front of the root of the word which alters its meaning. Examples are given below: 2.1.1 Word roots, suffixes and prefixes Medical term Prefix Definition of prefix In the process of cancer registration, particu- larly during collection of information on submandibular sub- below cases, personnel will meet medical terms hypogastric hypo- beneath, under, which may refer to symptoms, to diagnostic deficient procedures or to treatments. Registry workers aphoma a- without do not have to memorize all these different anencephalic an- without terminologies. However, it is important that endocardium endo- inside they learn the meaning of the more common bilateral bi- two word roots (or origins), prefixes (beginnings) contralateral contra- against, opposite and suffixes (endings) (the parts of words which are combined to make up medical A suffix refers to a syllable or group of syllables terms) to help in understanding difficult attached to the end of the root to modify its terms. This is especially useful as most medical meaning. Suffixes, as prefixes, modify the records are handwritten with varying degrees meaning of a root element. Examples are: of legibility. A simple medical dictionary is Medical term Suffix ofsuffl.x very helpful. Examples of suitable dictionaries Definition on the market are given in the list of suggested Appendicitis -itis inflammation further reading at the end of the Manual. Histology ...ology study of Most medical terms are derived from lan- Leukopema -penia deficiency guages such as Latin, Greek, French or Ger- Carcinoid