The first is how strongly did the test result—the x-ray or scan or blood test—suggest a cancer diagnosis?
The second is when is the next step—the biopsy or other test—being done?
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