Cancer is a Word, Not a Sentence

If you can focus on the answers to these two questions, you may be better able to cope with those queasy feelings of uncertainty that will probably creep up on you from time to time.

It is better to focus on the day-to-day events at this stage, than to start worrying, or researching, or surfing the internet about the way in which the cancer would be treated, if that’s the diagnosis. If you are mired in uncertainty—and everyone knows how very unpleasant that is—then you’ll be better off acknowledging that uncertainty than driving yourself crazy by drawing up plans for each eventuality. Of course waiting is a really uncomfortable experience, but if you can see that for yourself and can acknowledge how uncomfortable it makes you feel, you can, to some extent, contain the anxiety, and at least draw a line around it. Acknowledging uncertainty usually helps your coping strategies. Denying the feeling usually doesn’t.

Fourth, a biopsy cannot be taken. There are a very few areas of the body where the process of taking a sample of tissue is so hazardous that a biopsy can’t be done safely. Although this situation is rare, it does apply, for example, to certain crucial areas of the brain, particularly the brainstem, which is the stalk-like back part of the brain and forms the major highway controlling and conducting almost all information from the body to the brain. Injuries to the brainstem would be so devastating that most types of biopsy are too hazardous. If there is a suspicious lesion in that area, it will usually be treated as if it were a brain tumour, even without a tissue diagnosis. There are a few other situations like that, but they are rare. In these uncommon situations, often the treatment plan has to be based on imaging—CT or MRI or some other scan—without a tissue diagnosis.

What next?

It will help you to know how your medical team is planning to make the definitive diagnosis if there isn’t one yet. You need to know if there’s going to be another biopsy, and if so when, or if special stains are being used on the tissue sample, or more blood tests are being done, or if the tumour sample—as is commonly done—is being shown to other pathologists or sent to other centres. These are relatively simple questions to ask, and to answer, and knowing the plan for the next stage will make you feel a bit easier.

The two questions that are most commonly asked

This may be the appropriate time to deal with two questions which go through most people’s minds at the time of a diagnosis. I’m including them here to reassure you that, however embarrassed or perplexed you may feel about these two issues, you are not alone. Many people—patients and friends—feel uncertain about them.

The first question:Is the diagnosis in my case certain or suspicious?

At first, this point may seem obvious, but for many people it does need some thought.

Whenever we hear the word cancer from a doctor or health care professional, we immediately feel that, as one patient put it, ‘The jury is back and the verdict is final.’

Now sometimes the diagnosis is certain. Although, as this entire book points out, the outlook for the future depends not on the word cancer alone, but on which kind of cancer, at what stage, and what kind of treatment options are possible.

So always take a mental breath and ask this first question: is the diagnosis certain or suspicious? Sometimes you’re not absolutely sure what your doctor said—or meant—and it may take some thought and some questions to your medical team to find out whether the diagnosis is a preliminary suspicion or a certain and definitive one.

This is probably hard for you. Even so, it’s worth thinking about the issues that we’ve discussed in Step One so far, and then asking your doctor or other member of the medical team where they are in your particular case. Understanding something about the uncertainties will make it easier for you to comprehend the answers that you hear.

The second question:Why couldn’t this have been found earlier?

Hindsight—as the saying goes—is 20/20.

It is not unusual to look back on any major event and to ask ourselves why it happened, and what we could have done differently that would have made things turn out differently. This is a normal reaction. It’s the ‘if only’ reaction, and it is a response that is so common that it is almost universal.

When the diagnosis is one of the cancers, the ‘if only’ response is even more intense—partly because of the universal sense of dread and fear attached to the word cancer. The deeper the fear, the more persistent the feeling that it could have been avoided.

There are three aspects of the way cancers develop that may partly account for (and so help you to understand) the apparent lateness of the diagnosis. Those three factors are: the location of the cancer (where it starts), the speed (or slowness) with which cancers grow, and how common the symptoms are. Let’s deal with each of those three aspects in some detail.

First, where the problem starts. In many areas of the body, a group of cells growing in an uncontrollable way will produce a symptom that you notice yourself. The amount of growth that can occur before you notice it depends on where exactly in your body the process starts. In some areas of the body, you’ll notice soon after it starts, in other areas it may take a longer time.

For example, you are likely to notice a change in the skin on your face at a very early stage. The skin is quite tight and there is not a great deal of tissue underneath it, and also we look at our faces regularly. That means that skin cancers on the face (either the common and relatively docile ones—the basal cell cancers or the squamous cancers—or the potentially more aggressive and rare ones—the melanomas) are likely to be detected early. But the same kind of problem somewhere where the skin is looser and not often examined—in the middle of your back, for example, or on the back of your calf or your sole—may grow for a longer time before it is noticed. This is a simple example of how the place (the location), of a problem, inside the body or out, can make a difference to the immediacy of the detection.

Another example is the breast, where a lump is relatively easy to detect by routine mammography because the breast tissue is relatively accessible to x-rays. And mammography, which, as almost every woman will point out, is not necessarily comfortable for the patient, but is, technically, fairly easy to perform.

The breast, then, is relatively accessible to x-rays. But the ovaries, located in the pelvis, are not. The female pelvis is a brilliant piece of evolutionary design for ensuring the protection of a growing foetus during pregnancy. The uterus and the ovaries are soundly protected by the rigid cage of bone, which ensures the safety of a pregnancy, but also makes them relatively inaccessible. So, the down side of the design of the pelvis is that pelvic organs are relatively protected from signalling early signs of trouble. If a mass begins to develop on an ovary, it will not cause symptoms that the woman will notice for a long time (unlike a breast lump) and, for that reason, cancer of the ovary will have spread around the abdomen in about two-thirds of cases before it is diagnosed.

Hence the position in the body—the geographical location of the tumour—drastically affects the ease or difficulty of an early diagnosis.

Second, the slowness of cancer growth. Contrary to what most people believe, the vast majority of cancers actually grow fairly slowly. In fact, the average cancer cell probably divides into two cells about once a month. There are certain tumours where the multiplication speed is faster than that, particularly in the childhood cancers, and there are a few tumours that are much slower, but that’s a reasonable average.

The bottom line is significant. Imagine a group of cells dividing every month (that’s not exactly how it happens, but it’s a useful analogy). After a year, one cell will have produced approximately four thousand cells. At that rate of multiplication, it will take two and a half years for the mass of cells to reach the size of a small grape, about one billion cells. In other words, even if we could detect every tumour when it was grape-sized, the tumour would still have had two and a half years of reproduction before we found it. So most cancers do not, in fact, grow very fast.

This reality is very different from what most people think—and is another unfortunate result of lumping all two hundred or so cancers together under a single label. From reports in the media most people get the impression that every case of cancer is an emergency. This impression is also (in part) the result of the way we give priority to patients receiving treatment for cancer. Many types of treatment need a very exact time schedule. Chemotherapy and radiation, for example, must both be given on an exact schedule. Missing some days or doses is hazardous both in terms of loss of efficacy and in terms of possible side effects. Now while this, quite appropriately, means that cancer patients receiving treatment must get priority, it does not mean that the cancer itself is an emergency, although most people assume it is.

The result is that it becomes almost conventional wisdom to imagine that all cases of cancer will cause serious medical problems in a very short time, and that once a cancer begins, it will cause noticeable or detectable problems in a few days or weeks.

In the vast majority of cases—and it is worth stressing this point again—the situation is nothing like this. There are actually very few situations in which a cancer causes problems in so short a time. But the sense of dread and fear is amplified by the sense of urgency that often accompanies it. So in many cases the answer to the question, ‘Why could it not have been detected earlier?’ is related to the time-scale of the cancers themselves, not the failure to do tests often enough.

Third, how often does the same symptom occur when there is nothing serious going on? As the saying goes, ‘Headaches are common, brain tumours are rare.’ Some cancers—in fact, quite a few—may initially cause symptoms that are very common indeed.

This means that it can be very difficult to identify the few cases in which something potentially serious is going on from the very large number of benign cases, where nothing much is happening. That is why symptoms that might be associated with a cancer should be checked out by a doctor. This is particularly true for headaches, for example. Your doctor, taking some details of the headaches, may well decide which situations need further tests and which do not. Another example is bleeding during or after a bowel movement. Once again, haemorrhoids are common and colo-rectal cancer is by comparison fairly rare, but if you have bleeding and your doctor does not see any haemorrhoids, then further testing might well be important.

These two examples illustrate how difficult it can be to identify the rare case of a cancer. I am not saying this as an apologist for the medical profession. I simply want to point out that we generally do our best, and that all biological problems—including symptoms and cancers—are quite variable.

Looking back on a problem, you can almost always identify a moment when a symptom began, and it is very tempting to blame yourself for not having gone to the doctor sooner, or to blame the doctor for not having made the correct diagnosis instantly.

As a cancer doctor I often see this reaction. It is sometimes called retrospective guilt, or even retrospective blame. People often feel that any period of time that elapses during the process of diagnosis has somehow jeopardised them. In fact, that is very rare. Those feelings are part of the baggage that is brought in with all the reactions to the word cancer.

STEP TWO

‘Do I actually need all these tests?’

Staging

Staging tests are, according to some, ‘the insult that is added to the injury’. Often, they seem to do no more than delay getting the treatment started. But they do matter, and this section explains why.

In particular, the way the treatment for a cancer is planned often depends largely on the stage it has reached. Early stages are frequently treated differently from later stages.

This section will help you to understand why staging tests, although they seem to be a nuisance and an irritation, really do matter.

The principles of staging tests

One patient compared staging tests to ‘a patrol of the premises by security guards—they usually don’t find anything, but they know how to sound the alert if there’s trouble.’

The point is that some cancers can invade to a greater extent locally than is apparent when the doctor examines you, and some can spread to distant areas of the body without causing any symptoms or noticeable trouble. If either of these things has happened, the treatment plan will have to be modified accordingly. So the screening tests are done in order to find out if there is anything unexpected going on. And that means that a very large number of people will be having tests which turn out not to show anything unexpected. It’s a nuisance, but it’s important.

The staging tests are selected on two basic and simple principles which we can best express as the answers to these two important questions:

If this particular cancer were to spread, where in the body it is most likely to spread to?

Which tests both have a high likelihood of detecting something wrong at an early stage and do not usually produce a false-alarm or false-positive? That means they don’t give the appearance of a serious abnormality when there is actually nothing wrong.

I can best illustrate these two principles with two tests in breast cancer—a bone scan, and a blood test called the carcino embryonic antigen (CEA).

The bone scan is actually quite a useful—and subtle—test. A small dose of a harmless radioactive isotope called technetium is given to you by intravenous injection. When the technetium circulates in the body, it is taken up almost exclusively by the cells in the bone that actually make the bone tissue. These cells are called osteoblasts, and where they take up the isotope the bone scan will show a fine pattern of tiny black dots.

In many cancers, the cancer cells settle in the bone and start destroying the bits of bone around them. This provokes a reaction by the defence team, the osteoblasts.

This reaction is almost always provoked if a group of breast cancer cells lodges in the bone. With other cancers, that reaction doesn’t always happen. But with breast cancer if there is even a relatively small group of cancer cells spreading to and settling in a bone—such as the spine, or the long bones of the arms or legs—the bone scan is highly likely to show them as a larger than average black splodge, or hot spot as it is called.

Now it also happens that other problems—particularly in the joints, such as arthritis—can also produce hot spots on the bone scan, but arthritis and most noncancerous problems usually look different (and appear in different patterns and places) from cancer metastases. So in the great majority of cases, an experienced radiologist can look at the bone scan and state with considerable certainty whether there are any areas that might be secondaries or not. In some cases, the bone scan itself cannot distinguish between a probably benign appearance such as arthritis and a probably metastatic appearance. Then, x-rays of the area or CT scans of the area will be required.