Cancer Patients, Cancer Pathways Historical and Sociological Perspectives Carsten Timmermann and Elizabeth Toon Science, Technology and Medicine in Modern History General Editor: John V. Pickstone, Centre for the History of Science, Technology and Medicine, University of Manchester, England (www.man.ac.uk/CHSTM) One purpose of historical writing is to illuminate the present. At the start of the third millennium, science, technology and medicine are enormously important, yet their development is little studied. The reasons for this failure are as obvious as they are regrettable. Education in many countries, not least in Britain, draws deep divisions between the sciences and the humanities. Men and women who have been trained in science have too often been trained away from history, or from any sustained reflection on how societies work. Those educated in historical or social studies have usually learned so little of science that they remain thereafter suspicious, overawed, or both. Such a diagnosis is by no means novel, nor is it particularly original to suggest that good historical studies of science may be peculiarly important for understanding our present. Indeed this series could be seen as extending research undertaken over the last half-century. But much of that work has treated science, technology and medicine separately; this series aims to draw them together, partly because the three activities have become ever more intertwined. This breadth of focus and the stress on the relationships of knowledge and practice are particularly appropriate in a series which will concentrate on modern history and on industrial societies. Furthermore, while much of the existing historical scholarship is on American topics, this series aims to be international, encouraging studies on European material. The intention is to present science, technology and medicine as aspects of modern culture, analysing their economic, social and political aspects, but not neglecting the expert content which tends to distance them from other aspects of history. The books will investigate the uses and consequences of technical knowledge, and how it was shaped within particular economic, social and political structures. Such analyses should contribute to discussions of present dilemmas and to assessments of policy. ‘Science’ no longer appears to us as a triumphant agent of Enlightenment, breaking the shackles of tradition, enabling command over nature. But neither is it to be seen as merely oppressive and dangerous. Judgement requires information and careful analysis, just as intelligent policy-making requires a community of discourse between men and women trained in technical specialities and those who are not. This series is intended to supply analysis and to stimulate debate. Opinions will vary between authors; we claim only that the books are based on searching historical study of topics which are important, not least because they cut across conventional academic boundaries. They should appeal not just to historians, nor just to scientists, engineers and doctors, but to all who share the view that science, technology and medicine are far too important to be left out of history. Titles include: Julie Anderson, Francis Neary and John V. Pickstone SURGEONS, MANUFACTURERS AND PATIENTS A Transatlantic History of Total Hip Replacement Roberta E. Bivins ACUPUNCTURE, EXPERTISE AND CROSS-CULTURAL MEDICINE Linda Bryder WOMEN’S BODIES AND MEDICAL SCIENCE An Inquiry into Cervical Cancer Roger Cooter SURGERY AND SOCIETY IN PEACE AND WAR Orthopaedics and the Organization of Modern Medicine, 1880–1948 Jean-Paul Gaudillière and Ilana Löwy (editors) THE INVISIBLE INDUSTRIALIST Manufacture and the Construction of Scientific Knowledge Jean-Paul Gaudillière and Volker Hess (editors) WAYS OF REGULATING DRUGS IN THE 19THAND 20THCENTURIES Christoph Gradmann and Jonathan Simon (editors) EVALUATING AND STANDARDIZING THERAPEUTIC AGENTS, 1890–1950 Sarah G. Mars THE POLITICS OF ADDICTION Medical Conflict and Drug Dependence in England since the 1960s Alex Mold and Virginia Berridge VOLUNTARY ACTION AND ILLEGAL DRUGS Health and Society in Britain since the 1960s Ayesha Nathoo HEARTS EXPOSED Transplants and the Media in 1960s Britain Neil Pemberton and Michael Worboys MAD DOGS AND ENGLISHMEN Rabies in Britain, 1830–2000 Cay-Rüdiger Prüll, Andreas-Holger Maehle and Robert Francis Halliwell A SHORT HISTORY OF THE DRUG RECEPTOR CONCEPT Thomas Schlich SURGERY, SCIENCE AND INDUSTRY A Revolution in Fracture Care, 1950s–1990s Eve Seguin (editor) INFECTIOUS PROCESSES Knowledge, Discourse and the Politics of Prions Crosbie Smith and Jon Agar (editors) MAKING SPACE FOR SCIENCE Territorial Themes in the Shaping of Knowledge Stephanie J. Snow OPERATIONS WITHOUT PAIN The Practice and Science of Anaesthesia in Victorian Britain Carsten Timmermann and Julie Anderson (editors) DEVICES AND DESIGNS Medical Technologies in Historical Perspective Carsten Timmermann and Elizabeth Toon (editors) CANCER PATIENTS, CANCER PATHWAYS Historical and Sociological Perspectives Duncan Wilson TISSUE CULTURE IN SCIENCE AND SOCIETY The Public Life of a Biological Technique in Twentieth Century Britain Science, Technology and Medicine in Modern History Series Standing Order ISBN 978–0–333–71492–8 (hardcover) Series Standing Order ISBN 978–0–333–80340–0 (paperback) (outside North America only) You can receive future titles in this series as they are published by placing a standing order. Please contact your bookseller or, in case of difficulty, write to us at the address below with your name and address, the title of the series and one of the ISBNs quoted above. Customer Services Department, Macmillan Distribution Ltd, Houndmills, Basingstoke, Hampshire RG21 6XS, England Also by Carsten Timmermann DEVICES AND DESIGNS: Medical Technologies in Historical Perspective (edited with Julie Anderson) THE RECALCITRANT DISEASE: A History of Lung Cancer (forthcoming) Also by Elizabeth Toon PRIVATE TRAUMA, PUBLIC DRAMA: Breast Cancer Treatment in Twentieth-Century Britain (forthcoming) Cancer Patients, Cancer Pathways Historical and Sociological Perspectives Edited by Carsten Timmermann and Elizabeth Toon University of Manchester Editorial matter, selection and introduction © Carsten Timmermann and Elizabeth Toon 2012 All remaining chapters © their respective authors 2012 Softcover reprint of the hardcover 1st edition 2012 978-1-137-27207-2 All rights reserved. No reproduction, copy or transmission of this publication may be made without written permission. No portion of this publication may be reproduced, copied or transmitted save with written permission or in accordance with the provisions of the Copyright, Designs and Patents Act 1988, or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency, Saffron House, 6–10 Kirby Street, London EC1N 8TS. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages. The authors have asserted their rights to be identified as the authors of this work in accordance with the Copyright, Designs and Patents Act 1988. First published 2012 by PALGRAVE MACMILLAN Palgrave Macmillan in the UK is an imprint of Macmillan Publishers Limited, registered in England, company number 785998, of Houndmills, Basingstoke, Hampshire RG21 6XS. Palgrave Macmillan in the US is a division of St Martin’s Press LLC, 175 Fifth Avenue, New York, NY 10010. Palgrave Macmillan is the global academic imprint of the above companies and has companies and representatives throughout the world. Palgrave® and Macmillan® are registered trademarks in the United States, the United Kingdom, Europe and other countries ISBN 978-1-349-44480-9 ISBN 978-1-137-27208-9 (eBook) DOI10.1057/9781137272089 This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources. Logging, pulping and manufacturing processes are expected to conform to the environmental regulations of the country of origin. A catalogue record for this book is available from the British Library. A catalog record for this book is available from the Library of Congress. 10 9 8 7 6 5 4 3 2 1 21 20 19 18 17 16 15 14 13 12 Contents List of Figures vii Acknowledgements viii Notes on the Contributors ix 1 Introduction 1 Carsten Timmermann and Elizabeth Toon Part I Patients 11 2 Three Stories: Generations of Breast Cancer 13 Joanna Baines 3 Running Out of Options: Surgery, Hope and Progress in the 36 Management of Lung Cancer, 1950s to 1990s Carsten Timmermann 4 A Case Study in Human Experimentation: The Patient as 57 Subject, Object and Victim Gerald Kutcher 5 Captain Chemo and Mr Wiggly: Patient Information for 78 Children with Cancer in the Late Twentieth Century Emm Barnes Johnstone Part II Pathways 101 6 Knife, Rays and Women: Controversies about the 103 Uses of Surgery versus Radiotherapy in the Treatment of Female Cancers in France and in the US, 1920–1960 Ilana Löwy 7 Measured Responses: British Clinical Researchers and 130 Therapies for Advanced Breast Cancer in the 1960s and 1970s Elizabeth Toon 8 Cancer Research and Protocol Patients: From Clinical 161 Material to Committee Advisors Peter Keating and Alberto Cambrosio v vi Contents 9 Uncertain Enthusiasm: PSA Screening, Proton Therapy 186 and Prostate Cancer Helen Valier 10 Patients and their Problems: Situated Alliances of 204 Patient-Centred Care and Pathway Development Teun Zuiderent-Jerak, Roland Bal and Marc Berg 11 Radicalism, Neoliberalism and Biographical Medicine: 230 Constructions of English Patients and Patient Histories Around 1980 and Now John Pickstone Index 256 List of Figures 1.1 Jo Spence, Patient’s Eye View, 1989 2 2.1 The author’s grandmother 14 2.2 The author’s mother (top right) at Piggotts Manor 15 2.3 Two generations 28 3.1 Schematic depiction of a ‘normal’ treatment pathway 40 for non-small cell lung cancer 5.1 The first panel of the original comic, Captain Chemo, 88 1999 5.2 The website version of Captain Chemo, 2001 90 5.3 Jack’s in-dwelling catheter was represented to him, 91 and in the book based on his experiences, as a friendly creature: ‘So that you don’t have to have too many needles the doctors put you to sleep and put a Hickman Line into your chest. … We called him Mr Wiggly’. Jack’s Diary 10.1 Care trajectory flow chart for Hodgkin’s lymphoma 214 10.2 Care trajectory flow chart for oesophageal carcinoma 215 10.3 Domains of situated standardisation 217 vii Acknowledgements The editors would like to thank the Wellcome Trust for their support of the Constructing Cancers project (Programme Grant 068397), which funded the research of several contributors to this volume, as well as the conference where most of these essays were originally presented. Our thanks also go to the scholars who have joined us in an informal ‘cancer history’ network, for their many stimulating discussions in Manchester, Paris, Bethesda and elsewhere. We greatly appreciate the critiques, input and support given by our colleagues at Manchester’s Centre for the History of Science, Technology and Medicine; thanks especially are due to Annie Jamieson for her editorial assistance with the final manuscript. Our greatest thanks, though, go to the contrib- utors to this volume, for their patience and good cheer throughout its very long gestation period. The editors and publishers wish to thank the following for permission to reproduce copyright material: • Oxford University Press, for ‘Schematic Depiction of a “Normal” Treatment Pathway for Non-Small Cell Lung Cancer’, Chris Williams, Lung Cancer: The Facts, 2nd edition (1992), p. 51. • The Royal Marsden NHS Foundation Trust, for the first panel of the original comic, Captain Chemo, 1999, and the website version of Captain Chemo, 2001. • The Leukaemia Research Fund, for the depiction of Mr. Wiggly from Jack’s Diary. • The University of Chicago Press, for material in Gerald Kutcher’s chapter, previously published by Kutcher in Contested Medicine: Cancer Research and the Military(2009). • Terry Dennett and the Jo Spence Memorial Archive, for Jo Spence, Patient’s Eye View (1989). viii Notes on the Contributors Joanna Bainescompleted her doctorate on the individualisation of cancer at the Centre for the History of Science, Technology and Medicine, Uni- versity of Manchester in 2010. She then took a public engagement role and is currently co-authoring a book on the history of childhood cancer in Britain. Email: [email protected] Roland Bal is Professor and Chair of the Department of Healthcare Governance of the Institute of Health Policy and Management in Rotter- dam, the Netherlands. His research interests include quality and safety of care and governance infrastructures in health care. He has published extensively on the development and application of information tech- nologies and on the creation of public accountabilities in health care and is leading the evaluation of several large-scale quality of care pro- grammes in the Netherlands. He was a member of the board of the ‘Better Faster’ quality collaborative in the Netherlands, a programme in which 24 Dutch hospitals participated to create innovative health care organ- isations, and leads the Dutch part of the EU funded Quaser project on quality management in European hospitals. Email: [email protected] Marc Berg is a partner at the health care consultancy agency Plexus Medical Group and affiliated with the Institute of Health Policy and Man- agement, Erasmus University Medical Center. His main interests are the generation and organisation of ‘high quality’ and ‘low cost’ health care practices, both at the level of the health care practices itself, as well as on the system level. Marc has co-founded the largest Dutch hospital redesign project in the Netherlands, Better Faster, which has been implemented in 25 per cent of Dutch hospitals. He is the Chairman of the Dutch Society for Quality in Health Care, and is deeply involved in policy debates on the future of health care systems. He helps insurance companies creating novel and constructive strategies in the emerging health care market, and works as coordinator for the Dutch Health Care Research Fund (ZonMw). Marc has published widely on medical sociology, sociology of techno- logy, standardisation, information technology and quality management. His books include Rationalizing Medical Work: Decision Support Techniques ix