Why Cancer Patients Need to Take Control of Their Own Treatment

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.

By Karol Sikora, Professor of Cancer Medicine and honorary Consultant Oncologist at Hammersmith Hospital and author of How To Beat Cancer.

It may well be the worst news that 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 there with you, or a son or daughter, but you might also be alone. You'll be in a strange place. You'll already be feeling unwell, otherwise you wouldn't be there, and you'll also be feeling anxious about what lies ahead.

The news is not good.

You have cancer.

Even before you step into the room to see your physician, 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.

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, like a business project. A few go into denial, and try to pretend it 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 - you will have to 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 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 drug company executives all mean well, and they do their best they can for the 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.

But 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 treatment of cancer 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 to 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.

What patients need to is learn how the system works. And learn how to make sure it works for you all the time.

My new book 'How To Beat Cancer' aims teach people 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. If you take charge of your own case you will get the best treatment possible. If you don't, then you will be at the mercy of a system.

When I started my career as a cancer specialist - more years ago then I care to remember - patients were meant to be passive. They did what the doctors told them.

But now they are used to taking control of their own lives. The manage their finances, their careers, their relationships. They should learn how to manage their cancer as well.

Karol Sikora is Medical Director of Cancer Partners UK, an independent sector organisation creating the largest UK cancer network, as well as Professor of Cancer Medicine and honorary Consultant Oncologist at Hammersmith Hospital, London. 'How To Beat Cancer' is published by Endeavour Press.

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