The street-wise patient's guide to surviving cancer: How to be an active, organised, informed and welcomed patient

The street-wise patient’s

guide to surviving cancer

At last! A reliable source of impartial advice to give patients control of their cancer treatment. The more patients understand, the more they can get the best treatment for their cancer and move positively on. This book is an absolute must have. All patients should read it to understand their cancer and what they can do to help themselves.

Professor Pat Price, Visiting Professor of Oncology, Imperial College London.

A hard hitting practical guide on how to beat the system and obtain the best chance of getting world class cancer care. This consumer guide signposts a clear way forward if you or someone you care for has cancer.

Professor Justin Stebbing, Professor of Cancer Medicine and Oncology, Consultant Oncologist, Imperial College, London.

This book is about what the NHS doesn’t tell you but what as a cancer patient you need to know. It is also a fascinating autobiography and medical history by one of the most famous cancer specialists in the country.

Professor Gus Dalgleish, Professor of Oncology, St George’s Hospital, London.

I really enjoyed reading this beautifully written book. It is unique. It is amazingly honest about how the system disempowers patients and how to fight back in a realistic and sophisticated manner. Read this to make sure you get the best care possible.

Dr Maurice Slevin, Consultant Oncologist, St Bartholomew’s Hospital and founder of Leaders in Oncology Care, Harley Street, London.

A well written, excellent guide for patients from A to the Big C. Essential reading for all cancer patients who are determined to survive. So much better than the anodyne advice from cancer charity and NHS websites.

Professor Jonathan Waxman, Professor of Oncology, Hammersmith Hospital, London.

EER Street-wise Patients Guides

A clearly-written, jargon-free, expert, practical, informative series of ‘how-to’ survival guides for patients who can act positively to get the best possible care when confronted with cancer. All of the guides have been especially written by leading doctors. With skilled advice on treatment options. With help on how to be an informed, positive, successful and welcomed patient. With detailed internet guidance on sources of information.

EER Street-wise Guides, No. 1.

The street-wise

patient’s guide to

surviving cancer

How to be an active, organised,

informed, and yet welcomed

patient.

Professor Karol Sikora

MA PhD FRCR FRCP FFPM

Professor of Cancer Medicine and Consultant Oncologist

Dean, University of Buckingham Medical School

Chief Medical Officer, Proton Partners International

Formerly Chief, World Health Organisation Cancer Programme

EER

Edward Everett Root, Publishers, Brighton, 2016.

EER

Edward Everett Root Publishers, Co. Ltd.,

30 New Road, Brighton, Sussex, BN1 1BN, England.

edwardeverettroot@yahoo.co.uk

The street-wise patient’s guide to surviving cancer.

EER street-wise guides, no.1.

First published 2016. Reprinted June 2016.

© Karol Sikora, 2016.

Karol Sikora has asserted his right under the Copyright, Designs and Patents Act 1998 to be identified as the author of this work.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or

otherwise, without the prior permission of the copyright owner.

Hardcover ISBN 978-1-911204-10-7.

Paperback ISBN 978-1-911204-11-4.

ebook ISBN 978-1-911204-12-1.

Typeset in Book Antiqua

Designed by Pageset Limited, High Wycombe, Buckinghamshire.

Printed and bound by T.J.International Ltd, Padstow, Cornwall.

The author

Professor Karol Sikora is a world respected oncologist and campaigner for better universal cancer treatment. He was Chief, World Health Organisation Cancer Programme and is now Dean of the University of Buckingham Medical School and Chief Medical Officer of Proton Partners International.

He studied medical science and biochemistry at Cambridge, where he obtained a double first. After clinical training he became a house physician at The Middlesex Hospital and registrar in oncology at St Bartholomew’s Hospital. He then became a research student at the MRC Laboratory for Molecular Biology in Cambridge working with Dr. Sydney Brenner, the Nobel Prize winner.

Karol’s forty-five years’ experience as an oncologist, nearly forty as a consultant in the NHS, has taught him that the effectiveness of treatment is more important than the organisation behind its delivery.

While he still remained a Consultant Oncologist at Hammersmith Hospital, London, he launched Cancer Partners UK, Britain’s largest independent network of innovative cancer treatment centres. This has merged with Genesis Care to create a global system of high quality cancer care. Building on his experience as Chief of the World Health Organisation’s Cancer Programme between 1997 and 1999 and an adviser to the UN’s International Atomic Energy Agency, he has also formed Cancer Partners International, which builds more affordable cancer centres in the developing world.

Throughout his career as an academic and a practising oncologist, Karol has realised the importance of tailoring treatment specific to the needs of his patients by using the latest medical research. In 1992, he helped establish a major cancer research laboratory at Hammersmith, which was funded by the Imperial Cancer Research Fund.

As a Fellow of Corpus Christi College, Cambridge, and a Dean and Professor of Medicine at the University of Buckingham, Britain’s first independent university, he writes and lectures regularly on the use of biomarkers and surrogate endpoints by using molecular diagnostics to personalise therapy. His books have included Treatment of Cancer – the standard British postgraduate textbook now in its sixth edition after 30 years.

Karol has continually fought on behalf of patients’ to have better access to new cancer drugs. In 2008, he was one of the main signatories of a letter to the Sunday Times, which forced the Government to review its policy of banning life- prolonging cancer medicines that are available to other cancer patients elsewhere in Europe. He has campaigned and lobbied MPs on behalf of British cancer patients to have better access to precision radiotherapy, an effective form of cancer treatment which targets it in exactly the right place.

His most recent project is the creation of Proton Partners International using private equity funding to create a network of proton therapy centres in Cardiff, Northumbria and London. He predicts that the physical advantage of protons will make them the best form of radiotherapy for around 10% of all patients treated with curative radiotherapy. This means a requirement for 18 such centres in the UK and yet the NHS is planning to only have two operational by 2020 with no more being planned.

Karol values treatment that does not overwhelm patients’ lives. Through his work at Hammersmith Hospital he helped to build a new Cancer Centre with enhanced patient day-care facilities. As Chairman of the Help Hammer Cancer campaign, he helped to raise £8 million – with a personal donation from the Queen – towards the construction of the new centre. He has introduced personalised supportive care strategies such as counselling and promoted greater transparency between doctor and patient.

He is married with three grown up children. He enjoys hill walking, climbing and visiting old railways.

Contents

Key Terminology

Chapter One: Your battle against cancer

Facing the news, taking back control and making the system work

Chapter Two: What’s your life worth?

Be aware of rationing and the rapidly rising costs of optimal care

Chapter Three: What is cancer anyway?

Information is power – understanding the problem is the key to finding a solution.

The cell

Normal cells

What actually is a cancer?

Classifying cancer

Cancer symptoms

Chapter Four: How is cancer treated?

Getting the best treatment plan specifically for you

Checklist of key questions on your treatment plan

Surgery

Surgery – what you need to know

Radiotherapy

Intensity modulated radiotherapy – IMRT

Image guided radiotherapy – IGRT

Proton beam therapy

Your radiotherapy checklist

Chemotherapy

Chapter Five: Modern cancer drugs and how we got here

Understanding how cancer drugs were discovered, and how clinical trials give you more options

Cancer drug discovery

Clinical trials

Where’s chemotherapy going?

Molecular signatures and stratified medicine

A toolkit for cancer drug development

Hormone treatment

Immunotherapy

Non-specific immunotherapies

Cancer vaccines

Monoclonal antibodies

Oncolytic virus therapy

Questions to ask your specialist

Chapter Six: Some specific cancer types

Here, getting specific information on services available locally is vital

Breast cancer

Surgery

Radiotherapy

Chemotherapy

Hormone treatment

Prostate cancer

Treatment

Colon cancer

How it starts

Treatment

Lung cancer

Diagnosis

Treatment

Lymphoma

Hodgkin Lymphoma

Diagnosis

Radiotherapy

Chemotherapy

Non-Hodgkin Lymphoma

Head and neck cancer

Surgery

Radiotherapy

Chemotherapy

Chapter Seven: Complementary and alternative medicine

Use wisely as an adjunct to conventional therapy but beware of unscrupulous quacks.

Supportive therapies

Achieving integrated care

The extreme alternatives

Chapter Eight: The politics of cancer

How to find out what you can get and then get it

Getting precision radiotherapy

Chapter Nine: Do you really want to know?

You need to take control of your situation so you understand the options and the decisions

Chapter Ten: What’s the receptionist called?

How to be a welcome patient and get the system to work for you

Chapter Eleven: Taking the midnight flight

Learn how you can unblock delays by being proactive

Chapter Twelve: Life after cancer

Learning to live with uncertainty and yet get back to normal

Getting back to work

Recurrent disease

Chapter Thirteen: The future of cancer care

Peering into the crystal ball

Innovation in cancer treatment

Barriers to introducing new therapies

Appendix: Using the web wisely

TOP 100 WEBSITES

TOP FIVE FOR INFORMATION

UK

England – regional

Northern Ireland

Wales

IRELAND

CANADA

USA

AUSTRALIA

NEW ZEALAND

Bladder cancer

UK

USA

Blood and lymphatic cancers

UK

Canada

New Zealand

Bone cancer

Brain tumours

UK

Canada

Australia

Breast cancer

UK

Canada

USA

Australia

New Zealand

Complementary and alternative medicine (CAM)

UK

USA

Gastrointestinal cancer

UK

Canada

USA

New Zealand

Gynaecological cancer

UK

Canada

Australia

New Zealand

Kidney cancer

Lung cancer

UK

Canada

Prostate cancer

UK

Canada

USA

Australia

New Zealand

Rare cancer

Skin cancer

UK

Australia

Younger patients

UK

Canada

USA

Australia

New Zealand

Acknowledgements

Key Terminology

ABVD – adriamycin, bleomycin, vincristine and dacarbazine

adjuvant – additional treatment

aetiology – cause of a disease

agonist – activates a receptor

anti angiogenic – treatments that stop tumours from growing their own blood vessels

anti hormones – drugs that block the action of hormones

assay – investigative procedure in laboratory medicine

biomarker – biological measures of a biological state

Bragg Peak – point of maximum dose in proton therapy

CAPOX/XELOX – capecitabine and oxaliplatin chemotherapy

CCG – Clinical Commissioning Groups

Chemotherapy – Cancer treatment using drugs

collimation – the focusing of a radiotherapy beam

Combination chemotherapy – Treatment using more than one drug

CT – Computerised Tomography

cyclotron – circular accelerator of protons

cytotoxic – something that is toxic to cells

DNA – deoxyribonucleic acid

EBRT – External Beam Radiotherapy

ECG – Electrocardiogram

EMA – European Medicines Agency

ER – Oestrogen Receptor (abbreviation takes US spelling Estrogen)

FDA – Food and Drug Administration

FNA – Fine Needle Aspiration, a type of biopsy

FOLFIRI – chemotherapy combination FOL – Folinic acid F – Fluorouracil (also called 5FU) IRI – Irinotecan

FOLFOX – chemotherapy regimen for colorectal cancer with FOL– Folinic acid F – Fluorouracil (5-FU) OX – Oxaliplatin

Fractions – radiotherapy given in daily treatments

gene therapy – using genes to treat disease

genomics – study of the genetic code

Grade, 1(low) – 3 (high) – Extent of tumour aggression, better – poorer outcome

gray Gy – unit of radiation dose

HER2 – Human Epidermal Growth factor receptor 2

hormone status – Whether the tumour is stimulated to grow by oestrogen or progesterone

IGRT – Image Guided Radiotherapy

IMRT – Intensity Modulated Radiotherapy

LINAC – Linear accelerator

MDT – multi-disciplinary team, meeting of hospital consultants from different disciplines

metabonomics – study of physiological state by monitoring metabolites

methylomics – the study of methylation patterns in DNA to characterise different cancers

Monoclonal antibodies – used in a type of biological therapy

MRI – Magnetic Resonance Imaging

mTOR – mammalian Target of Rapamycin

NATCANSAT – National Clinical Analysis and Specialised Applications Team

NICE – National Institute for Health and Care Excellence, UK guidance and recommendations

NOTES – Natural Orifice Translumenal Endoscopic Surgery

PASLU – Patient Access Liaison Unit

PET/CT – Positron Emission Tomography

phase I trial – tests the safe dose of a new drug

phase II trial – tests the effect of a new drug

phase III trial – compares a new drug with best available treatment

phase IV trial – wider trial for a licensed drug

photon – high energy x-ray used in conventional radiotherapy

PMDA – Pharmaceutical and Medical Device Agency

PR – Progesterone Receptor

proteomics – study of proteins, structure and function

proton – sub-atomic positively charged particles

PSA – prostate specific antigen

Radiotherapy – targeted ionising radiation

R-CHOP – Chemotherapy with rituximab, cyclophosphamide, doxorubicin, vincristine and prednisolone

RCT – Randomised Control Trial

RNA – ribonucleic acid

SABR – Stereotactic Ablative Radiotherapy

SHA – Strategic Health Authority

Single agent chemotherapy – Treatment using one drug

Stage – Size and site of tumour

TNM system – Staging system: Tumour 1-4 Nodes 1-3 Metastasis 0-1 (TNM)

VBP – Value Based Pricing

VMAT – Volumetric Modulated Arc Therapy also called RapidArc

WHO – World Health Organisation

Chapter One: Your battle against cancer

Facing the news, taking back control and making the system work for you.

It may well be the worst news that you will hear in your life. You’ll be sitting in a room, facing a person you hardly know. You might well have a husband or wife or partner there with you, or a son or daughter, but you might also be alone. You’ll be in a strange place. You may already be feeling unwell, otherwise you wouldn’t be there, and you’ll also be feeling very anxious about what lies ahead.

The news is not good. You have cancer.

Even before you step into the room to see your doctor, you should ask yourself this simple question. How do I feel about this?

For many people, when they are told that they have cancer, it will be the first time that they have confronted their own mortality. Of course, they will have known that they were going to die one day. We all do. But it is probably not something they have dwelt upon, and made peace with. They won’t have reckoned on it happening to them, at least not this soon. Death will have been something that happened to other people, or far in the future, after their children and perhaps grandchildren were all grown up. It won’t have been something they were reckoning on having to deal with right here and right now.

Now it is staring them in the face.

In my long experience as a cancer specialist, I have discovered that there are as many different reactions to the news as there are different types of people. Some people go to pieces. Some people go into a deep depression. Some start to get busy, treating their cancer as a task to be organised, managed, and dealt with rather like a business project. A few go into denial, and try to pretend it just isn’t happening to them, or that it will all go away in the morning when they wake up to a new day.

Whatever type of reaction you have – and there is no right or wrong way to cope with the news that you have cancer – this book is about helping you through the next few months. And, with luck, it will help you do so as calmly, stoically and as successfully as possible. It will also ensure you get the best treatment available, whatever type of healthcare system you are using.

Because whether you are hysterical or stoical won’t in the end make very much difference at all. What patients need to do most of all is immediately to start taking back control of their own treatment. And this will mean learning a lot of new information – and about how a whole very convoluted industry works.

When you are told you have cancer, you are about to go into a system – the cancer industry. I don’t mean to disparage the work of all the people within the system in the slightest. The doctors, nurses, other clinicians, health care managers and even drug company executives all mean well. They do the best they can for patients, often in very difficult and trying circumstances. Not all of them are angels. But few of them are devils either. Mostly they are a group of intelligent, hard-working people going about their work. Sure, there is conflict when the heady aspirations of business, greed, altruism and trying to get the best care possible for yourself collide.

You need to understand one very simple point. The system is not actually there to help you – or at least not you alone.

The system is there to help maximise the quality of cancer treatment overall, to make sure the organisation and the people within it make a living and to make sure the burden on society as a whole is not too great. Of course, much of the time that will mean