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DEALING WITH YOUR MEDICAL TEAM: THE EARLY STAGES

Most people are referred by their GP to their local hospital to carry out the first stages of investigation and diagnosis. You will probably be given the results of your tests by the specialist who examined you at the hospital. Even if you had suspected that your health problem was serious, a diagnosis of cancer still comes as a tremendous shock, and you will need time to absorb the medical details which are related to you. Everybody’s experience is different so Neil’s is not necessarily typical, although the sense of shock is shared by most.

I am afraid that there is really no way around that dreadful moment when the C-word is first used, and I am not convinced that there is a ‘best’ way in which it can be handled. I had been urgently referred to our nearest Accident & Emergency unit, but neither my partner nor I really had any idea why we were driving some 15 miles to hospital, having no inkling of the nature of the problem or its implications. We spent hours waiting in a side room while the house officer on duty tried to find time to diagnose me between more urgent calls.

Much later, it happened. A surgeon came in to examine me, felt my abdomen and testicles and announced without preamble, “I think it’s testicular cancer.’ He looked at our shocked faces and informed us, ‘Well, you wouldn’t have wanted it told to you any other way, would you?’ Like the first moment when a wave knocks you off your feet as a toddler at the seaside and you swallow a mouthful of seawater and struggle in panic to breathe again, this is a defining moment. The only question I could think of asking was ‘How long?’

‘With treatment, maybe a year or two. Without treatment, about six months.’ And that was that. Diagnosis complete. Neither of us had a clue how to face this.

The next few hours passed in a blur of X-rays and ultrasound scans which confirmed the surgeon’s diagnosis. We then left the hospital, with appointments for a CT scan the following afternoon and an operation to remove the testicle and primary tumour a few days later, but without the painkillers I had been promised.

It was several weeks later that a different consultant at a different hospital gave us the relatively joyous news that he put my chances of a complete recovery at about 50:50. This was a different picture altogether, and gave us something more tangible to hold onto and fight for now.

However sensitively and carefully you are told the news about your cancer, you will probably be aware only of an immense, almost physical sense of shock. How much information you subsequently take in during your consultation is bound to be limited, but even at this stage it is important to try to understand what your doctors tell you. This may sound harsh as it can be difficult to interpret what doctors are saying, even if they are clear in their information from a medical point of view. For example, if you are told that an X-ray or scan shows a shadow or lesions, or that a blood test shows abnormal levels of proteins or hormones or that you are anaemic, this may not necessarily mean much to you as a lay-person, and especially in terms of your cancer diagnosis. You are unlikely to feel like taking charge of the consultation and asking probing questions in scientific terms. Most of us do not have the medical background to be able to do so, and in these circumstances you may well not be capable of your usual rational thought processes.

Becoming accustomed to medical jargon is one hurdle to be crossed. You can’t be expected to be familiar with much of the terminology you hear, and it can feel as if you are being blinded with science. Asking for terms to be explained is essential because those same terms are likely to arise again and again. Bear in mind too that while you may feel frustrated at your need to say – yet again -’Could you just explain exactly what that means, please?’, doctors need to be precise and accurate in the information they give you and hence need to draw on the appropriate precise and accurate medical terms. It would be even more frustrating simply to be told, ‘There’s something a bit odd going on in your stomach/chest/blood.’ A glossary of the terms you are most likely to encounter is included at the end of the book.

Although it can feel like hard work, do try to make sure you have a basic understanding of what you have been told, so that you are not left wondering later if you have remembered correctly. If you attend the consultation alone, you might even try to make a few written notes of the main points and check with your doctor that these are accurate. This approach does not suit everybody, but is a useful habit if you can manage it. If you have a member of your family or a close friend with you and you are happy for them to sit in on your consultation, then they can help by playing a ‘listening’ role for you or by taking notes. At some hospitals it is possible to make a tape recording of your out-patient consultations with doctors which you can play back later.

The process of communication at this early stage is critical, and has to work both ways: not only do you need to understand what you are told, but you need to be able to describe to your doctor how you are feeling. This might include both general and specific points such as:

how you feel generally – basically well, or run down, or suffering weight loss, etc;

your specific physical symptoms – cough, headache, digestive problems, difficulties with mobility, lumps in or on the skin, etc;

whether you have any pain, where it is and what type it is (occasional, constant, stabbing, dull, etc).

If you have previously visited your doctor’s surgery only rarely, it can be difficult to find the right words to describe how you are feeling and it can be tempting to leave out information because it seems trivial or because you feel embarrassed. It can be equally tempting to overstate your symptoms or problems to ensure that they are not overlooked, but this is more likely to cause confusion – if you have an occasional pain, try not to give the impression that it is continuous and unbearable! Don’t worry that you can’t use medical terms: it is more important that you are clear, accurate and as factual as possible in your account and that your doctor has an adequate picture of your problems.

Doctors should always ask you if you have any questions, and at this early stage it can be difficult to formulate exactly what you want to know, when you are still feeling the effects of the initial shock. If you do have specific concerns – especially if you are experiencing any pain – then it is important that these are addressed, and that you feel that you are being listened to. Going home without asking the one key question which has been bothering you for a fortnight will only cause you additional stress in the days to come. You certainly should not feel that the doctors are too busy to spend time answering your questions. They have many demands on their time, but they do want to offer you the maximum possible help and they cannot do this to the full if you feel afraid to discuss your concerns and queries with them.

You may be offered information in the form of leaflets to read at your leisure or the opportunity to talk to a specially trained nurse about your cancer. Your GP will also be kept informed about your diagnosis, and may be able to offer support or details of organizations which can provide you with more detailed information about your cancer. If you are not offered any help of this type and you feel it would benefit you, then do ask. All hospitals should at the very least be able to help you to find written information even if they cannot provide it themselves.

You may well need further tests before your treatment can begin, and the timescale will depend on your hospital and the nature of your cancer. In some cases, a delay of several weeks may be of little consequence and in others it will be necessary to act more quickly. The doctors looking after you should ensure that you receive your care at an appropriate time, but if you feel that delays are occurring for no good reason, then do not be afraid to mention this. You may find that there is a valid reason why tests are not scheduled immediately or your next consultation will not take place for a fortnight. Perhaps test samples have to be sent away to another lab for investigation, for example.

Time can easily become a big issue, especially in retrospect. From a doctor’s viewpoint, apparent delays are likely to stem from one of two reasons. First, there is a medical need to be sure that the diagnosis is correct. One oncologist commented that most doctors can think of little worse from a patient’s point of view than being told erroneously, ‘You have cancer’ and then, later, ‘No, it’s all right. Just a mistake. You don’t.’ Secondly, even after the initial diagnosis has been made, it is still incomplete from a medical viewpoint. For example, different types and extents of cancer need different treatments (there are several types of lung cancer, bladder cancer and testicular cancer, to name just a few), and further tests may therefore be necessary to define the exact type or extent. If you understand these reasons, you will have one less worry in the meantime. With the benefit of hindsight, Neil felt he might have avoided a very distressing week by asking more questions.

After the surgical removal of my testicle, there was a terrible period of 12 days before I was admitted to a specialist cancer unit as an emergency. In retrospect, we did not make anywhere near enough noise to try to force the issue during that time. But we were still deeply in shock, trying to find out more about this cancer and desperately trying to keep on top of the practical details of our lives. While it was quite obvious to me that I was deteriorating rapidly, we assumed that the medical profession knew best, and if they said ‘Wait at home’, then we would wait at home. Although we were trying to be sensible and co-operative, to the extent of making written notes about my particular problems, when we did have a hospital consultation the week after my operation nobody wanted to listen to us. The details of my diagnosis (whether my testicular cancer was of the seminoma or teratoma type) were not yet available, and therefore I did not appear to exist as a cancer patient.

A further week later, I attended a cancer clinic at the hospital. The details of my diagnosis were confirmed, and at last a cancer specialist was listening to me. I was in constant pain and could no longer eat at all. She examined me briefly, arranged for X-rays to be taken and arranged for me to be admitted to the cancer unit of a hospital some 30 miles away, as an emergency patient.

The point of relating this experience is not to heap criticism on the medical profession – although a little more support would have made a huge difference. What is more important is to know when to make a fuss, and not to be afraid to do it. Consultations can be brought forward, stronger pain-killers can be provided – it is not asking too much. Unfortunately, you may only develop the confidence to stand up and make your views known much later.

It is likely that you will see more than one doctor during the testing and diagnostic process. You may feel that you undergo the same physical examination and description of your symptoms and history over and over again. This can feel frustrating, and it helps if you understand the role of the various different doctors in your care. For example, you may see a specialist in treating the part of the body in question (Such as a urologist or a chest specialist) and also an oncologist (a cancer specialist). Indeed, you may see several doctors at different levels of seniority from each of these departments, and it can take some time to work out where they fit into the hospital hierarchy. They should always introduce themselves to you, but again, do not be afraid to ask them about their role in your care: they may be involved only in your diagnosis, for example, or in a longer term role in the treatment of your cancer. They may be instrumental in reaching decisions about your diagnosis and treatment, or they may have a more junior role.

One vitally important issue your doctors should address early on is the potential need for sperm collection and banking. If they do not, then you should not feel shy to bring up the subject yourself: it is too important an issue to be passed over. Some chemotherapy drugs and radiotherapy treatments can affect your fertility and if you have not yet had children or feel that you may wish to have more children in the future, then you may need to consider sperm banking. This should be discussed with you at an early stage if it is appropriate: once treatment is underway, then it may be too late. In some cases, fertility may gradually return after treatment is completed, but sperm banking will act as an insurance policy if this is not the case. This is a difficult and emotive issue, particularly for relatively young men who had assumed that they would one day father children without the need for medical intervention, and you may find it difficult to discuss with relative strangers. It may also be that you already feel saturated with bad news and would rather not face yet another problematic issue. Do try to talk about it, not just with your doctors but also with your spouse or partner and remember that it may be an extremely valuable insurance policy in years to come.

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