Life After Cancer in Adolescence and Young Adulthood: The Experience of Survivorship

207 Pages·2009·1.07 MB·English

by  Anne Grinyer

Life after Cancer in Adolescence
and Young Adulthood
Adolescence and young adulthood is often a difficult enough time without
serious illness. However, research has shown that cancer, and surviving
cancer, at this age presents distinctive problems medically, socially and
psychologically. This important work offers a glimpse into a previously
under-researched area and contributes to a better understanding of the needs
of adolescents and young adults post cancer.
Focusing not only on the physical effects, but also the social, cognitive,
emotional and physiological consequences of surviving cancer in adolescence
and young adulthood, Anne Grinyer draws directly upon data collected from
adolescents and young adults who have been treated for cancer. The book is
structured around themes they raised such as fertility, life plans, identity,
psychological effects and physical effects. These issues are drawn together in
the final chapter and related to clinical and professional practice as well as
current policy.
This book presents the voices of those who have lived through the experi-
ence of cancer in adolescence and young adulthood, and links them to the
relevant theoretical and analytical literature. It will be of interest to profes-
sionals and researchers in nursing, social work, counselling and medicine as

well as medical sociologists, young adults living with cancer and survivors of
young adult cancer.
Anne Grinyeris Senior Lecturer in Health Research at Lancaster University,
UK.

Life after Cancer in
Adolescence and Young
Adulthood
The experience of survivorship
Anne Grinyer
First published 2009
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
Simultaneously published in the USA and Canada
by Routledge
270 Madison Avenue, New York, NY 10016
Routledge is an imprint of the Taylor & Francis Group,
an informa business
This edition published in the Taylor & Francis e-Library, 2009.
To purchase your own copy of this or any of Taylor & Francis or Routledge’s
collection of thousands of eBooks please go to www.eBookstore.tandf.co.uk.
© 2009 Anne Grinyer
All rights reserved. No part of this book may be reprinted or
reproduced or utilised in any form or by any electronic, mechanical,
or other means, now known or hereafter invented, including
photocopying and recording, or in any information storage or
retrieval system, without permission in writing from the publishers.
Library of Congress Cataloging in Publication Data
Grinyer, Anne, 1950–
Life after cancer in adolescence and young adulthood:
the experience of survivorship/Anne Grinyer.
p. cm.
1. Cancer in adolescence. I. Title.
[DNLM: 1. Adolescent. 2. Adult. 3. Life Change Events.
4. Neoplasms—psychology. 5. Survivors. QZ 275 G868L 2009]
RC281.C4G773 2009
616.99(cid:2)400835—dc22
2008045332
ISBN 0-203-87880-9 Master e-book ISBN
ISBN10: 0–415–47702–6 (hbk)
ISBN10: 0–415–47703–4 (pbk)
ISBN10: 0–203–87880–9 (ebk)
ISBN13: 978–0-415–47702–4 (hbk)
ISBN13: 978–0-415–47703–1 (pbk)
ISBN13: 978–0-203–87880–4 (ebk)
This book is dedicated to the memory of George whose life, illness and
death have inspired the last 9 years of my research, and to his parents
Helen and Geoff whose support has contributed so much to the under-
standing and knowledge of the life stage effects of cancer in adolescence
and young adulthood. The book is also dedicated to all the participants
who shared their stories with me and spoke with such bravery and for-
titude of the many challenges they faced in their lives as survivors of
young adult cancer.
‘… if I had been ten years older then I would have had that bit of my
life without interruption.’
(Thomas: 13 years after he was diagnosed with
a brain tumour at the age of 17)

Contents
Acknowledgements viii
Participants ix
1 The late effects and long-term consequences of
survivorship 1
2 Case studies 14
3 The physical legacy and the fear of recurrence 31
4 Long-term follow-up and the need for ongoing
support 61
5 The emotional legacy: how it changes philosophy and
perspective 85
6 Survivorship identity, the resistance to victimhood and
the positive outcomes 106
7 The effect on life plans and the long-term financial
impact 126

8 The impact on fertility 147
9 Implications for policy and practice 167
Appendix 178
Notes 184
References 185
Index 190
Acknowledgements
This book could not have been written without the help, support and input of
many others. My thanks go to those long-suffering friends and colleagues
who read and commented so helpfully on early drafts, they include: Helen,
Geoff, Judith, Jennifer, Julie and Jane. The research could not have been con-
ducted without the financial support of the George Easton Memorial Trust
and all those who contribute to it. The technical help from Anthony has been
invaluable as has the knowledge that I could rely on my stalwart transcriber
Karen. I would also like to thank those health professionals who allowed me
access to their patients and ex patients. In addition, I owe a huge debt of grat-
itude to the Lymphoma Association and the Teenage Cancer Trust; both
organisations helped me to recruit and provided an invaluable route through
which to reach long-term survivors. However, my biggest thanks must go to
the participants – those long-term survivors who were willing to share their
experiences with me and who trusted me with their life stories. I hope that
they will think I have done justice to the material they so generously
contributed.
Participants
Survivors
Andrea: Diagnosed at 18 with acute myeloid leukaemia, 39 when inter-
viewed.
Ashley: Diagnosed at 17 with cutaneous T-Cell lymphoma, 54 when inter-
viewed.
Ben: Diagnosed at 18 with testicular cancer, 22 when interviewed.
Bob: Diagnosed at 14 with non-Hodgkin’s lymphoma, 62 when interviewed.
Dan: Diagnosed at 21 with testicular cancer, 26 when interviewed.
Debbie: Diagnosed at 24 with Hodgkin’s lymphoma, 46 when interviewed.
Elaine: Diagnosed at 21 with Hodgkin’s lymphoma, 26 when interviewed.
Elaine B: Diagnosed at 23 with Hodgkin’s lymphoma and at 25 with non-
Hodgkin’s lymphoma, 38 when interviewed.
Gillian: Diagnosed at 20 with Hodgkin’s lymphoma, 54 when interviewed.
Greg: Diagnosed at 12 with osteosarcoma, 31 when interviewed.

Helen: Diagnosed at 17 with Hodgkin’s lymphoma, 35 when interviewed.
Huxley: Diagnosed at 17 with acute lymphoblastic leukaemia, 35 when
interviewed.
Jack: Diagnosed at 14 with Hodgkin’s lymphoma, 23 when interviewed.
Jamie: Diagnosed at 21 with testicular cancer, 23 when interviewed.1
Janet: Diagnosed at 18 with Hodgkin’s lymphoma, 45 when interviewed.
John: Diagnosed at 18 with Hodgkin’s lymphoma, 51 when interviewed.
Julie: Diagnosed at 24 with Hodgkin’s lymphoma and breast cancer 14 years
later, 39 when interviewed.