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.
A brief guide to the tissue diagnosis
In most cases, one of the three routes that we’ve just described will lead to your clinical team organising a biopsy, a sample of the suspicious tissue or portion of the organ in which the abnormality has been detected. Biopsies are relatively straightforward.
The word biopsy simply means taking a piece of tissue. There are many ways in which that can be done, and it depends on the part of the body in which the problem is situated. For example if there is a lump in the breast a biopsy can be taken with a thin needle after a little local anaesthetic. The procedure is minor and takes only a few minutes. However, a biopsy from a problem area in the brain is considerably more complex. It requires a proper operation with a general anaesthetic and may take an hour or longer.
In the case of many of the organs inside the abdomen, a biopsy can be taken during a laparoscopy. Usually done under general anaesthetic this procedure does not require a full incision and involves only inserting a thin telescope through the abdominal wall, by which a biopsy can be taken. There are different ways of doing the same thing depending on the part of the body involved. For instance, during a bronchoscopy, the surgeon will examine your lungs and bronchial tree with a thin telescope called a bronchoscope, then slot fine tweezers into the bronchoscope and take a piece of tissue from the wall of a bronchus, one of the tubes that conduct the air into your lungs. During colonoscopy, a similar method is used to take a biopsy from your colon (large bowel) or rectum. Similarly, it is possible to look at and take a biopsy from the structure in the middle of the chest, between the lungs and around the heart, called the mediastinum. That procedure is called a mediastinoscopy.
Depending on the exact site of the suspicious area, sometimes you may need to have a separate operation for the surgeon to get an adequate sample of the area. So you may need to have a laparotomy (an operation in which the abdomen is opened) or a thoracotomy (opening the chest to allow access to the lungs or the heart or the mediastinum) or, in the case of the suspicion of a brain tumour, a craniotomy (opening of a part of the skull to allow access to an area of the brain).
In some areas, sufficient information can be obtained from the suspicious area or lesion by using a thin needle and taking a thin core of the tissue. This is called a needle biopsy. Using an even finer needle and sucking out some cells from the tumour is called a fine needle aspirate and may, in some circumstances, give enough information to plan further tests, including a larger biopsy.
The bone marrow is in some ways a special case. The bone marrow is where the cells in the bloodstream are produced. When there are malignant cells in the bloodstream, as occurs in the various types of leukaemia and some other conditions, a bone marrow sample is taken. Sometimes this consists of inserting a fine needle into the bone marrow inside the pelvis. The needle goes in—under anaesthetic, of course—near the top inside part of the buttock area and a sample of the cells is sucked out.