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 treating your cancer as quickly and effectively as possible. But – and this is the important point – not all the time.

As a patient, you need to learn how the system works. And you need to learn how to make sure it works for you all the time.

With any luck, that is what this book will be able to do – teach you how the system works, from someone who has spent an entire career inside it, and show you how you can make it work better for you. It doesn't matter whether you are rich or poor, black or white or have been educated at university or not. Nor does it matter how the health system you are using works – tax based as in Britain or Canada; social insurance as in much of Europe, or a cut throat free market economy as in the USA or many poorer countries. If you take charge of your own destiny you will get the best treatment possible. If you don't, then you will be at the mercy of a system whatever it is.

The most important person is you – so you must be satisfied that you are getting the best treatment possible. Do not be put off by bureaucracy or complexity – you only get one bite at the cherry – you need to get the best type of treatment from the start. Negotiate calmly without aggression and usually locked doors will simply open and a mutually satisfactory solution found.

That's why you need this book – because the later chapters will give you an insiders' guide to making sure you get the best treatment possible, regardless of cost. The next chapter gives you a summary of what cancer is and how it's treated. Obviously it's not tailored to your problem or your country but it will help you go to the web and find out more about exactly what your problem is. The internet, if used correctly, will act as your guide to the best treatment for you that's possible today.

I have spent most of my career in Britain where our great institution the NHS is viewed as a religion by many. What exasperates me is that although it can deliver world class cancer care for some people for many it is a very low quality system where the four 'D's' dominate – delay, discrimination, denial and determination by committee. Let me give you a concrete example of how the system gets overridden by those in the...