Cancer is a Word, Not a Sentence

Cancer is a word, not a sentence.

Dr Robert Buckman

Foreword by Dr Miriam Stoppard

With Major Contributions by Dr Pamela Catton and the Medical Staff of the Princess Margaret Hospital,Toronto, Ontario

This book is dedicated with deep, genuine respect and admiration to a man who combines careful research, vision and foresight with extraordinary compassion and humanity:

—DR JUDAH FOLKMAN

Table of Contents

Cover Page

Title Page

Dedication

Foreword

Introduction A word, not a sentence.

Part One ‘What’s going to happen to me next?’

Part Two ‘What’s treatment like?’

Part Three ‘Isn’t there an easier way?’

Part Four ‘How do I get back on track?’

Part Five ‘Do I always have to have a positive attitude?’

Part Six ‘What can I do to help myself?’

Appendix I

Appendix II ‘Where can I get more help?’

Further Reading

Index

Acknowledgements

Author’s Note

Copyright

About the Publisher

Foreword

I don’t have to read this book to applaud it. I applaud the idea of it. I applaud the fact that Dr Buckman wants to change the way we talk, think and feel about cancer. He wants to give us a fresh, hopeful perspective about cancers. He wants us to use a different language to describe them so that we can be open and unafraid to discuss them. He wants to take away their unpredictability using science as his weapon. Reassuringly he explains that cancer is only a process like infection, inflammation and degeneration. Cancer displays a particular kind of behaviour, as do infection, inflammation and degeneration, that we can predict. This predictability makes it manageable.

This is a good news book. It’s also, literally, a lifeline. Rob Buckman is such an experienced oncologist and such a good doctor that he can get into the head of almost anyone with cancer and know instinctively what to say to them. He’s adept at coaxing cancer patients to confront their illness and realise that, in at least half of patients, it doesn’t kill. He changes our perception of the odds.

But the news is even better than that. For if you look at cancers with 20/20 vision and separate them into the myriad of different kinds that exist, you cut them down to size.

One of the most helpful ways to think of cancers is as a family, some members of which are relatively friendly, some are hostile and some are downright toxic. The helpful analogy that Dr. Buckman cites is another family—the family of virus infections. So for instance, the common cold virus and the flu virus are relatively benign family members and then we have the potential killers, relatives like the HIV/AIDS and Ebola viruses. It’s just the same with cancers.

I had a light bulb moment the first time Rob explained this analogy. I’ve never thought about cancers in the same way since and I hope it frees and empowers you, too.

Medical books on cancer abound but few concentrate on the all important job of putting the patient first; your feelings, your fears, your questions, your worst thoughts. Cancer affects us like nothing else does and Dr Buckman knows this. He starts by calming you down. He allows your rational mind to hold sway over your emotional mind. Gradually you get your bottle back and start taking charge of your illness. In restoring your mental and emotional equilibrium he gives you a firm sense of resolve to embark on the journey you’re going to travel. You feel in control again.

Dr Buckman and I share a journalistic approach to information. We believe that information is light. Without it, we’re in the dark, and for a cancer patient it’s a terrifying dark. Dr Buckman is only too aware of this and has written, as far as I know, the only practical guide to inform you about the full implications of your diagnosis.

His guide will illuminate and inform every step that you’ll be taking through diagnosis and treatment. This knowledge isn’t just liberating—it will restore and build your spirit and help you to cope. You’ll find a new strength to overcome the temporary mental paralysis that envelopes us all when we get seriously bad health news.

This knowledge truly is light and is the beginning of understanding. Without it none of us can cope.

Should I become a cancer patient this book will be my mentor, friend and counsellor. It will never leave my bedside table.

DR MIRIAM STOPPARD

INTRODUCTION A word, not a sentence.

Read this first—it will help you get your balance back

If you’re reading this book, you’re probably reeling.

Most people are knocked off balance and reeling when the diagnosis is a cancer. It’s the normal reaction: it’s what everybody experiences, and it’s why I’ve written this particular book, with the collaboration of my friend and colleague Dr Pam Catton and many other members of the medical staff of the Princess Margaret Hospital, Toronto, Ontario, in this particular way.

This book is going to do one specific thing for you: it’s going to help you get your balance back. It will do that by offering a steady hand that guides you and gives you a sense of direction.

The problem starts with the word cancer. There are so many overtones and associations attached, it is probably the most dreaded word in the English language. It brings with it, universally, queasy feelings of fear and doom. Many people describe the sensation as chilling, or as a sense of help-lessness, or even as a foggy feeling of mental paralysis. They experience a sense of unreality, and feel ‘this can’t be happening to me’.

That’s why I wrote this book: to help you get over that initial shock and to understand, make sense of, and then cope with the facts of your own situation. I wrote this book, in fact, to help you get your balance back.

A simple fact of unparalleled importance

Let’s start that balance-restoring process with a simple fact—and it’s a fact that I think everybody should know, but that most don’t.

It might be the most ignored and under-publicised medical statistic in the known world!

It is this: around half of those people diagnosed with cancer in the UK will be successfully treated and most of these will not be troubled by it for the rest of their lives.

I think that’s worth repeating. If you have one of the cancers, overall—that is, taking all the cases diagnosed this year in the whole country—the chance of surviving it (and, in most uses of the word, being considered cured) is approximately 50 per cent. That’s not as high a percentage as it should be—90 or even 100 per cent would be better. But that figure, which has been increasing steadily over the last four or five decades, is vastly better than most people think it is, or fear it might be.

Even though we live in an age in which we are awash with information, that one fact seems to have remained submerged. Many people still think that a diagnosis of a cancer is a sentence.

One of my patients put it succinctly: ‘We all have this feeling that if we’re diagnosed with a cancer on Monday we’ll be dead by Wednesday. Thursday at the latest. If we’re lucky.’

That is what most people have in the backs of their minds, and that is why it is so difficult to cope with any cancer diagnosis. Even when you are told that the prognosis is good—let’s say for a small cancer of the breast that has not spread to the lymph nodes—you will most likely still have a deep-seated doubt, a tendency not to believe that news.

That’s why this book is necessary, and why I’ve given it such a specific title. The whole problem starts with the fact that we are discussing a word, a single word that (as you’ll see) lumps together over two hundred different diseases. Yet that word should not be the end of a conversation, it should be a beginning—it should be the start of a fact-finding mission. As you will learn in the rest of this book, what really matters to you is not simply the diagnosis itself, but many other aspects of your situation that are much more important and relevant to you and your future.

Questions such as these:

 What specific disease—which of the two hundred different cancers—is it?

 What does it actually mean for your future?

 How does this particular cancer behave?

 What are the treatment options?

By beginning to answer those questions you will start to get a picture of what is going on in your case, and that’s what you need in order to begin coping with your situation.

The word cancer is the start to finding out, as precisely as possible, and with more and more accuracy over time, what is going on. As the title of this book tells you from the outset, cancer is just a word. It’s not a sentence.

The map with the ‘You Are Here’ sticker

You need to get your sense of direction back, too.

A general sense of direction—knowing the way the land lies and the way things are going—helps you get back some feeling of control.

Most people—not everyone, but most—find that one of the really difficult aspects of a new cancer diagnosis is the feeling that they’ve lost control. You haven’t got a clear overall picture of the situation: you feel bewildered and ‘de-skilled’. To make matters worse, many of the new people that you meet in your medical team may not have the time to explain the big picture to you. Sometimes they do, and when that happens you’re lucky. But there is a lot to do and organise at the time of diagnosis, staging, and the start of treatment. And clinics are generally extremely busy places. In most cases the time to explain the overview simply isn’t there. That’s another reason why there seems to be a real need for this guidebook.

In a way, what I am doing here is creating a cancer-treatment map, like the ones you see in the entrances to shopping centres with a bright red ‘You Are Here’ sticker to give you a sense of direction. I hope that this book will provide you with your own bright red sticker and will, in a perplexing and complicated territory, give you some idea of where you are and where the various paths and options lead.

Most of the current books about cancer give you the relevant facts and usually discuss treatment options. Obviously you’re going to need that kind of information as well. But as you first come to grips with a diagnosis of one of the cancers, you need something else. You need a practical guide that matches your day-to-day experience.

This book is, I hope, precisely that. It is the first step-by-step ‘what-do-I-do-now’, practical guide specifically written to help you through those first few bewildering weeks and the various steps of diagnosis and treatment, and to provide simple, practical, everyday help in coping.

What you’ll find here is not a comprehensive compilation of cancer facts, biology, and treatment. Instead, you’ll find a clear and straightforward guide for use in your real world. It will show you what the diagnosis actually means, what the tests are all about, what the future depends on, how to judge the benefits of various treatment options and how to cope with the side effects of treatment and all the various uncertainties and ups and downs of follow-up. In simple and straightforward language this book explains what’s happening and how to cope with it.

You need something that shows you how this new and unfamiliar terrain is laid out, and gives you some sense of direction as you navigate your way through it.

When you’re lost in a forest, you don’t need a field guide to the trees. You need a map of the forest.

The bottom line at the top of the book

Right at the start, let me give you a few simple guidelines. I’ll explain more about them as we go along, but we all like a hint of the bottom line upfront, so here are the most important dos and don’ts:

SOME IMPORTANT DO’S, SOME IMPORTANT DON’TS Do try to get a reasonable, general overview of your type of cancer. Don’t respond simply to the word ‘cancer’ as a universal and total signal of doom and gloom. Do get a small amount of trustworthy current information: perhaps visit a few reputable cancer websites (see Appendix II on page 240). Don’t go to the internet and collect hundreds of different views, opinions, home remedies and fringe medications. By and large if there really is something major going on, almost all the professionals know about it. Do accept, which means admit and acknowledge to yourself, any uncertainty about the diagnosis and/or treatment at this stage. Uncertainty is always unpleasant—and it’s easier to cope with if you acknowledge that fact. Don’t think that things won’t change after you hear the first view of the diagnosis or treatment. Plans may well change as time goes on, so try to stay as flexible as possible. Do ask your medical team a few specific questions once you understand the general overview of your situation. Don’t—or try not to—ask the same questions too often. Two or three times are usually enough. Asking over and over again usually means that it’s difficult for you to accept the answers. Do get a second opinion if you really think you need it. Don’t get a third opinion (or more!) if the second opinion is the same as the first. Do think about why you want to go to a complementary medicine remedy or clinic and what you expect. Don’t make a major early investment (in time, money or hope) in complementary medicine or a clinic without thinking about it for a time and discussing it. Do take a few minutes to look at the ways you can talk to your medical team and your friends. Don’t shout at your friends and family, or blame them. (Or try not to, anyway.) It’s usually better to explain your feelings, rather than exhibit them, although we all have some moments when we can only vent. Do talk to your friends and family. Don’t feel that you have to hold all your concerns and worries in until you know all the answers. Do tell the people you like that you like them. Nobody minds being told nice things! Don’t cut yourself off from the people that you really like. We all tend to feel a bit uneasy and vulnerable when things aren’t going well or we are upset. True friends are people you can share those feelings with. Do Breathe! With the word ‘cancer’ most people have a feeling that the roof will fall in tomorrow. This book is all about dispelling that illusion. Don’t Panic! The word ‘cancer’ causes in almost everyone a major sense of urgency and panic. In the vast majority of situations, even though it’s difficult to believe, there is plenty of time to get informed and make decisions. Do spend a little bit of time every day doing something you really enjoy and thus look forward to. It can be anything, even watching a favourite TV programme or listening to a CD. Don’t sell the furniture! Which is the same thing as Don’t Panic—a motto that’s so important it’s worth saying twice.

‘I keep on wondering…’

Many people find that they have dozens of questions running through their minds when they are given a diagnosis of cancer. The two most frequent questions which go round and round in their thoughts are:

 What does this diagnosis actually mean in my case?

 What’s going to happen? (In other words, what does the future hold?)

Often, you may find that those questions can’t be answered with certainty. With the best will in the world, even the most experienced doctor can’t predict precisely what is going to happen to every single person with a cancer, or how every individual case is going to turn out.

But it is often possible to explain in general terms what the situation looks like, and which aspects of the tumour have the greatest bearing on what’s likely to happen.

This book will show you the path that you’ll travel in the first few weeks, and shed light on the various tests and the several uncertainties that you’re likely to encounter along that path. I hope that this guide will help you to understand and cope with what’s going on.

Understanding is the beginning of coping

Getting your balance back is the start: and it’s the beginning of a process by which you build up your own coping strategies—the personal psychological mechanisms and devices that you use (as do we all) to cope with shocks and bad news. By the time you’ve read through this book you’ll find that you can put your own personal diagnosis and medical plan into some form of perspective. A cancer diagnosis almost always makes you feel overwhelmed, often helpless, and almost paralysed at first. The information, hints and tips in this guide will make it easier for you to understand what’s going on and how to cope with it.

When it comes to coping with cancer, the cure for that nasty feeling of paralysis is understanding. It’s the first stop on the way to getting your situation into perspective and putting your own ‘You Are Here’ sticker on the map.

A guide to this guide

This book consists of this introductory chapter, six Parts, a section of Tables, and a directory listing sources of further help.

Part One, ‘What’s going to happen to me next?’ is the equivalent of the large-scale map of the main routes. It gives you the broad overview of how things are arranged, and how they happen.

In Part One I start by explaining the basics: what cancer actually is (or rather, what the cancer process actually is), and how the cancer process is a feature common to the two hundred or more different diseases that we call the cancers. I also explain that most of those different diseases have little in common with each other, apart from sharing the basic cancer process.

After that, I set out the six basic steps of planning and coping, from the moment of diagnosis onwards. This part is basically the map of how cancers are diagnosed, assessed, and then treated, with explanations of why follow-up is so important and how to cope with the anxiety it often produces.

What you will find is that there are clear and straightforward explanations of the various (often mystifying and bewildering) tests, results, discussions, treatment plans, and so on; and also a detailed strategy for asking the right questions to get a real understanding of your situation.

Part Two, ‘What’s treatment like?’ explains the four main types of treatment used in treating the cancers—surgery, radiotherapy, chemotherapy and biologic agents—and explains how treatment is constantly being improved by research studies called clinical trials. This part concludes with some practical tips about communicating with your medical team: who the various members are, and some guidelines for discussing potentially awkward situations, such as your feelings and requests for a second opinion.

Part Three, ‘Isn’t there an easier way?’ deals with complementary medicine. It will help you weigh and assess the many alluring claims made for remedies that are said to be active in treating cancers while not producing side effects. I believe that it is very important to think clearly about why you want to try complementary remedies and what you might expect from them.

Part Four, the all-important ‘How do I get back on track?’ is all about recovering: getting back to normal, or nearly, after and during treatment. Here you will find some general guidelines to help you restore some order and balance to your life, plus a section on how to talk with other people, including your friends and relatives. I have also included a section specifically for your family and friends, setting out some guidelines on how to talk to you.

Part Four continues with discussions of spirituality and religion, and then sexuality and dealing with sexual problems that are quite common after cancer diagnosis and treatment. It concludes with a section on hope: what it means and the many different forms it can take.

Part Five, ‘Do I always have to have a positive attitude?’ deals with a widely debated topic: cancer and the mind. Here you will find a discussion of the many claims and statements made about the effect of the mind on the cancer process itself, including a review of several major studies which have been done on this subject.

Part Six is called ‘What can I do to help myself?’ and you will be glad to know that the first section of this part is called ‘You’ve already started’. Here, I summarise the process of regaining control over what seems at first an arbitrary and uncontrollable situation, and I conclude this part with the most important statement about the value of support: you are not alone.

Then, the section of Tables provides detailed descriptions of various drugs, tests and procedures.

Finally, in Appendix II on page 240 you will find a list of national organisations and their websites, plus some other internet sources that are trustworthy and credible, as well as a list of useful books.

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