Kitabı oxu: «Cancer is a Word, Not a Sentence»

PART ONE ‘What’s going to happen to me next?’

—A step-by-step guide

Beginning at the beginning: what is cancer anyway?

Curiously enough, cancer is not a disease.

Everyone uses the word as if it represents one disease, in the same way we refer to diabetes, multiple sclerosis, or Alzheimer’s as diseases. But cancer is not a single disease at all—it is a process. It is a process by which many different diseases—the cancers—are created. And that fact, as you will see, changes everything.

Cancer or the cancers? a big difference

The cancer process is shared by over two hundred very different diseases—such as cancer of the breast, cancer of the lung, cancer of the bowel and so on —which together make up a widely disparate group that we should really call the cancers. The central point—and this is important—is that most cancers have very little in common with each other, apart from sharing the fundamental cancer process.

Let’s take a couple of examples to illustrate the very wide range of conditions that make up the cancers. (This may sound a bit simplistic, but stay with me: it’s a very important point.)

If you have had one of the common types of skin cancer—basal cell cancer, or the other common type, squamous cell cancer—once the lesion has been removed, it is highly unlikely that the cancer will ever cause you any trouble again. You may later develop other skin cancers on other parts of your body, and occasionally the cancer can come back in its original place, but it is exceptionally rare for anyone to be seriously affected by one of these types of skin cancer. These particular cancers never spread to distant or important parts of your body, and so they never pose a threat to your life. It’s that simple.

In fact, from the point of view of endangering your health or life, it would almost be possible, as a patient once put it so neatly, to think of these types of cancer in the same way we think of warts—which are themselves benign tumours, growths that do not invade or spread.

For that very reason these types of skin cancer—as opposed to the much rarer melanoma, which may in some circumstances recur or spread—are not included in the cancer statistics. So when we are told that 276,678 new cases of all types of cancer were diagnosed in the UK in 2003, those numbers do not include the common skin cancers, which in themselves probably number several thousand cases. In many respects, then, the common skin cancers represent one end of the spectrum: they are cancers, but once they are removed the chance of their causing you serious trouble is zero.

On the other hand, if you happen to have, let’s say, advanced cancer of the pancreas, the chance of it being cured is very low. Pancreatic cancer is always very serious, and it has a high probability of threatening your life.

These two examples—skin and pancreas—in many ways represent the two ends of the spectrum. They behave in totally different ways and have nothing in common with each other, apart from the cancer process itself. They are not the same disease in any way.

This issue is not just a matter of semantics or grammar. The language that we use and the way we use it deeply affects the way we think. And that changes the way we feel—and how worried or afraid we may be when any topic is raised. That effect is particularly evident—and very powerful—with the cancers. The way we think and talk about this group of diseases greatly affects the impact that we usually feel when we hear a diagnosis including the word cancer.

The general view that cancer is a single terrible disease is now so ingrained into our way of thinking that it’s quite difficult for us to think differently. But it is so important for you to get rid of the old cancer-is-a-single-disease idea that I would like to use another analogy to illustrate the point. So let’s look at what would happen if you took another large group of diseases, the infectious diseases, and lumped them all together, as if they were one single disease.

‘Cancer’ as compared to ‘infection’

As we all know, the infectious diseases cover a vast spectrum of seriousness, from the totally trivial to the lethal. At the trivial end of the spectrum is the common cold. We’ve all had colds. We all know that a cold is caused by a virus, of the type known as a rhinovirus, infecting the lining of the nose. We sniff and snuffle for a few days, then it goes away and we forget about it.

Think about another example of a virus infecting an organ and causing trouble: hepatitis B. Hepatitis B is an infection of the liver that is unpleasant and can sometimes be very serious. Then there are other viruses that are even more serious—for example Ebola virus or Marburg virus (both of which have very high mortality rates), HIV/AIDS or avian flu.

We would not dream of grouping these totally different diseases (the common cold, hepatitis B, Ebola virus and HIV/AIDS) together under a general diagnosis of infection. But think for a moment what it would be like if we did.

Try to imagine the world as it would be if we lumped all those diseases together, the terrible ones and the trivial ones, under the single label of infection.

The world of the single disease infection would be a scary world indeed. Anyone who developed a sniffle and a runny nose would not be diagnosed with a cold, because in this imaginary world we do not have that word to use as a diagnosis. Instead, they would be told that they have come down with ‘infection’.

Infection! Like those infection outbreaks that happened in Africa and India and killed all those people! The patient would panic and worry that the infection might next appear in the liver, or the blood system, or the immune system, or maybe all of them! Perhaps this episode of runny nose and sniffles is the beginning of one of those types of infections—the ones that overwhelm you and pose a serious risk to health or life!

The analogy is apt, even though I’ve made it sound a little ridiculous. When you lump different diseases together and you include diseases of greatly different behaviours under the same label, you increase the fear and the dread that the label brings with it.

This is what has happened with the cancers. By constantly referring to this large group of different diseases under the generic title of cancer we generate—even if it is only in the subconscious—a deep-seated fear and dread, and create a subtle premonition that somehow any of these two hundred different diseases, even a highly curable one, might mysteriously turn into one of the more aggressive ones.

By attaching the label of cancer to all those different diseases you subtly link them all together. The real problem is that by linking them together and lumping them under one label, you remove the predictability of the individual diseases and you create the myth of a single, unpredictable and changeable super-disease which can mysteriously leap from one type of disease to another. I’m now going to show you that cancer is a process, in the same way that ‘infection’ and ‘inflammation’ and ‘degeneration’ are processes, not diseases in themselves.

Our reaction to a diagnosis of a cold or the flu would be fear and dread if we thought that the prognosis might actually be serious, because ‘everyone knows that infection can affect the liver/blood/immune system next’. Lumping together all those conditions that behave so differently into one group would create the myth of a single and totally unpredictable condition. The mere mention of the super-disease infection would terrify and paralyse anybody who started getting a cold.

It’s the same with the cancers.

When you lump all of the different cancers together as a single mysterious disease that you then call by the one name cancer, the predictability of the various different cancers is lost. And there is a tendency to dread any of the cancers with the same fear and sense of doom attached to the most serious of them: cancers of the skin seem to be somehow linked to cancer of the pancreas.

When predictability is lost, fear and panic rush in to fill the vacuum.

Now it’s not quite as cut-and-dried with the cancers as it is with most of the infectious diseases. Each of the cancers does carry with it some unpredictability—although it is usually pretty limited. Although most cancers are not totally predictable, there are well-known limits to that unpredictability. We cannot predict everything, but that doesn’t mean that we can’t predict anything! It is possible to predict the future, as far as possible, with each separate cancer, and to know which factors are important in each disease in predicting its behaviour and the chance it will spread. So maybe the comparison with infections is fair after all. We know that a cold won’t last six months, but we can’t predict whether it will be gone in five days or ten days.

Having established that all two hundred (or more) cancers do share a common process, let’s start by taking a look at that process itself.

The cancer process

Cancer is what happens when a group of normal cells start to grow in a disorderly and uncontrollable way and may spread into neighbouring areas or to distant parts of the body. In fact, the cancer process consists of three stages.

First, a particular group of cells, for example in a duct in a breast, starts growing in a way that we can see under the microscope is disorderly and uncontrollable. The cells don’t line up in the normal way, their nuclei look peculiar, and their whole appearance—to the expert pathologist—suggests that the cells have escaped from the normal mechanisms that regulate and control cell growth.

Second, the growing cells invade into neighbouring areas. In normal tissues, the boundaries between one type of tissue and the neighbouring areas are strictly demarcated and the tissues on each side of the border, as it were, stay in their allotted territory. In cancers, the cancer cells do not respect the normal boundaries and wander across the border.

Now, if every single cancer did only these two things—grow uncontrollably and invade locally—cancers would probably pose a very small risk to health and life, and there would be a fairly small number of deaths from the cancers every year. In most types of cancer, the primary tumour is not the major problem.

The problem with most of the common cancers is that they may also display a third kind of behaviour. They may spread to distant areas of the body. That process is called metastasising. When a cancer does that, the secondary cancers that it creates in distant areas of the body—for example, the liver or the lungs—are called metastases, or secondaries. It is the metastases that are most often the real problem and that usually pose a more serious threat to health and life. (There are a relatively small number of situations in which the primary cancer in itself can cause serious illness or death. It can happen, but it’s rare.)

So, the process of metastasising is extremely important and has been the focus of major research efforts over the last fifty years. We now believe that some cancer cells have a high tendency to metastasise, while others do not. We now know a few of the characteristics of highly metastatic cells—the hallmarks, as it were, of aggressive and spreading tendencies.

In many cancers, the pathologist can tell us, to some extent, whether the chance of its spreading to distant areas is high or low or average. At the moment, however, we cannot predict whether an individual cancer in a specific person will or will not spread. We can say, for example, that some breast cancers have a high chance of metastasising. But we cannot tell Mrs Brown if hers will metastasise or not.

And that’s a very important point. Because if we knew for certain that Mrs Brown’s breast cancer was not going to spread, then we would not need to recommend any treatment after surgery in her case. And, if we knew for certain that Mr Smith’s cancer of the bowel was going to spread, then we would recommend further treatment after surgery. And if, over the course of a few years, Mr Smith did not develop metastases then we could say for certain that our treatment had worked.

Sadly, we are not there yet. At present we can confidently predict only the range of probability of metastasising, and then recommend treatment options to decrease the risk.

Take breast cancer as an example. If a woman has a small breast cancer (say a centimeter or so) and if it has spread to, let’s say, only one of the lymph nodes in the armpit, and if tests on the cancer show that it is likely to respond to hormone treatment, then we can make some pretty good predictions about its behaviour and the size of the risk to the patient.

In this case, we can say that for an average type of cancer with these characteristics, the chance of it spreading to distant areas of the body is not high. In fact, the chance of dying of a breast cancer like that over the next ten years, if the patient doesn’t take any treatment after the surgery, is about 15 per cent. But if the patient does takes hormone tablets for five years after the surgery, that chance is reduced by about one-third, to about 10 per cent or so. Of course even a 10 per cent chance of the cancer coming back is not trivial—but compared to the general perception of the situation with breast cancer, it is (to most people) surprisingly low.

This is relatively easy to understand. What’s difficult to realise, often, is that nobody knows what will happen in any individual case. We know the general risks, but not the specific outcome.

Nobody can say whether or not an individual cancer will spread. And therefore nobody can say—in any individual case—whether the treatment is preventing recurrence or whether the cancer would not have recurred anyway.

Presently, then, in the majority of cases where we recommend treatment after surgery (as we shall discuss further in Step Three, page 39) we can only talk about the likelihood of the cancer spreading and the likelihood of the recommended treatment preventing that spread. It’s not a very good basis on which to make recommendations, but for the moment it’s the best we have.

In the future, we may be able to ‘fingerprint’ the cancer cells much more accurately and perhaps distinguish with certainty those cancers that will not spread from those that will. When we reach that stage, the whole basis on which we recommend treatment will be much more rational and intelligible. And we may see that stage, for some cancers, in the next five or ten years.

So, it’s this third step of the cancer process—by which the cancer can spread to distant parts of the body—that represents most of the threat to health and life.

To put it simply then, the cancers are a group of diseases that all share the characteristics of growing in a disorderly and uncontrollable way and potentially spreading to other areas of the body. If you can keep this fundamental principle in mind, then much of the next section, in which we discuss the six steps in coping with a cancer diagnosis, will make a lot of sense.

STEP ONE

‘Are you really sure it’s cancer, Doctor?’

The diagnosis

The actual diagnosis is always a shock. Furthermore, it quite often happens that the initial diagnosis may be preliminary and may not be definitive or absolutely certain. In those situations, the uncertainty almost always makes things more difficult for you, as well as for the people around you who want to know what’s going on and what’s going to be done for you. It’s almost always harder for everyone to cope when nobody knows exactly what needs to be coped with.

So this section explains what the diagnosis depends on: when it is likely to be definitive and when it isn’t, and what types of further tests may be important.

There are basically only three main ways in which a cancer can be detected and diagnosed. Naturally, this is going to be a considerable oversimplification, but it’s helpful to discuss the process of diagnosis under these three broad headings because it will make it easier for you to understand what is going on in your own particular case. It is one of those situations where a map of the forest is useful before you go through the field guide to the trees.

The ways in which a first diagnosis is made

Although there are literally hundreds of symptoms and tests that may eventually lead to a diagnosis of a cancer, for practical purposes we can divide the situations into three broad categories. This way of thinking about the process of diagnosis may actually make it easier for you to keep track of where you are at the moment, and what your future options are, as you move along what may feel like a very convoluted and slippery path.

In broad terms, then, the main routes to a diagnosis of a cancer are: First, diagnosis from a test investigating a symptom or problem [or several symptoms or problems] that you have been experiencing. A symptom is something you notice yourself, such as a lump in your breast, or chest pain, or blood in your sputum or on your stool. You go to your doctor, who orders a test, or several tests.

If, in your case, a test has led to a biopsy—taking a piece or specimen of tissue—then you’ll probably want to go straight to page 24, which explains what a biopsy tells us.

If you’ve had a test or tests, but haven’t yet had a biopsy, then you may want to go to page 27, which will discuss the different degrees of certainty and suspicion that nearly all tests will yield.

Second, diagnosis via a screening test that yields an abnormal result. Screening tests are, by definition, tests done on people who do not have any symptoms or problems related to the disease for which they’re being tested. Tests that are used in this way—for screening of people without symptoms—include mammograms, smear tests, colonoscopies and prostrate-specific-anitgen [PSA] blood tests. The whole idea of a screening test is to detect the condition—and some cancers are good examples of this—at an early stage when treatment may have a better effect than if it is given later when symptoms have developed.

For example, all women who have ever been sexually active should have a regular smear test, everybody over the age of sixty should have a rectal examination and if necessary a colonoscopy, and women should have annual mammograms starting at age fifty. These tests, which have been studied and researched, increase the chance of a cancer being detected at an early stage before it causes symptoms. In these particular cancers, and in some others, the studies show that by detecting the cancers at earlier stages, treatment results are improved and some lives are saved.

That is the idea, and it works extremely well in many medical conditions, including quite a few cancers. But there are some problems with every screening test, and it is worth going over them here because you might, at this moment, be hovering near the phone, worrying about the results of a screening test. Or you might have been told that a screening test result is abnormal or uncertain, and you might wonder why screening tests are ever done in the first place if the results don’t tell you whether you’ve got a cancer or not.

Most of the time screening tests give clear and dependable results. But sometimes the results may be unclear or worrying. So let’s go back and explain why.

Here’s the bottom line: all screening tests sometimes yield unclear results (the correct term is equivocal) because there are virtually no tests that have an infallible 100 per cent success and reliability record. All biological populations vary. There is a range of every aspect of human life—a range of heights, of intelligence, of athletic prowess and so on. This goes for most diseases too: there are very many situations in which one cannot be certain whether a particular result is normal or abnormal.

As well as test results sometimes being equivocal, they can also sometimes be wrong—telling you that there is a disease when there isn’t, or telling you that there isn’t a disease when there is. This means that with every screening test, some people may be very disappointed that there is not a clear result, some may be unduly alarmed, and a few may be falsely reassured. Unpleasant, but inevitable. At present, we don’t have the technology to eradicate those uncertain and unsettling results even though there are very few of them.

Third, diagnosis as an incidental finding during a procedure for something else. It sometimes happens, and it is not all that rare, that a procedure is carried out for a purpose not related to a cancer (or even the suspicion of a cancer) but during the procedure a cancer is found. You may be having a hysterectomy for fibroids, for example, when evidence of a cancer is found.

If this happened to you—an unexpected incidental finding during a procedure for something else—then psychologically it is very tough indeed (as you may be feeling right now).

But take heart. It is usually a good thing if a cancer is discovered as an incidental finding. Generally speaking, cancers that do not cause you any problems or symptoms usually have a somewhat better prognosis than those that call attention to themselves by producing symptoms or problems.

However, the lack of symptoms often makes the intellectual shock worse. Almost every patient to whom this happens says, ‘But I was feeling so well’. And they mean it. If you are feeling unwell, you may be prepared psychologically for a diagnosis of something potentially serious. But if you have no problems, much less a suspicion of a cancer, the shock is often much greater.

The secret to coping with that shock—in line with the central message of this book—is to get informed. It’s worth spending a little time trying to get an overview of your cancer. As I pointed out earlier, a few cancers pose an immediate (and sometimes serious) threat to you, but most cancers do not. So it’s really important that you try to get a handle on what has been discovered in your case. That information will greatly help you in marshalling your own coping strategies. So, even though a diagnosis out of the blue may well knock you sharply off balance, you can help yourself steadily to regain that balance by finding out what kind of a problem you are now dealing with.