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• a change in the appearance of a mole
• a sore on the skin or in the mouth that won’t heal
• persistent coughing, hoarseness or blood in the sputum/spit
• prolonged constipation or diarrhoea, or blood in the stool
• difficulty in passing urine or blood in the urine
• unexplained weight loss
• unexplained fatigue
• difficulty swallowing and unexplained nausea
• severe headaches and odd neurological symptoms (such as weakness or numbness)
• unexplained abdominal swelling
• vaginal bleeding between periods and any vaginal bleeding after the menopause.
Of course, all of these symptoms can also result from much less serious conditions than cancer and, more often than not, a doctor will be able to reassure you that nothing is seriously wrong. However, it is important to wait until all of the appropriate diagnostic tests have been done. Too often, GPs give reassurance on the basis of a clinical examination in their surgery, only to be proved wrong at a later date. GPs expect patients to come back if symptoms persist, so it is important to trust yourself and keep going back if you think something is not right. Although most people are sent for tests immediately, far too many visit their GP over and over again before they are sent for the appropriate X-rays, blood tests or other investigations. They can then discover in the end that their intuition was right – that something is seriously wrong and that a cancer that could have been treated easily as a primary has now spread to other parts of the body. So, please be alert to whatever messages your body is giving you.
If you are really concerned that a GP is not responding to you appropriately, get a second opinion from another GP or even arrange to have investigations done privately or through an integrated medicine doctor.
Ask yourself what support you need to get through the diagnostic process.
Visiting your GP
Once you have overcome your fears and are able to actively seek a diagnosis, make an appointment with your GP. If you wish to, take a friend or partner with you. Clearly explain your symptoms and your concerns about having cancer or a recurrence of cancer. This is important so that the GP takes your situation seriously and so that, if you do not have cancer, you can be properly reassured.
Receiving good news
Once the tests have been done, it is often possible for doctors to give you reassurances that all is well. This is particularly common for those who have had a primary cancer and who understandably then suspect every headache or twinge of being a recurrence. What is important here is your peace of mind, and the doctors should help you to get the reassurance you need until you feel better and settled again.
But even if the news is good, you may perhaps wish to treat the incident as a ‘wake-up call’, and embark upon a Health Creation Programme as an insurance policy to avoid your ever having a scare like this again.
Receiving bad news
Regrettably, 270,000 people per year in the UK do receive a diagnosis of primary cancer, and an equal number have a diagnosis of secondary spreading. A cancer diagnosis is something we all dread. If you are sitting in the horrible hot seat at this moment and have just got the news, be reassured that a great deal of help is at hand!
Despite the high rates of cancer in the developed countries (four in every 10 of us will develop a cancer during our lifetime), most of us live our lives feeling immortal, believing that these things only happen to other people. The news of a life-threatening diagnosis can be like a bomb going off in the centre of our lives, completely shattering our security and our sense of the life we expected to have.
Nevertheless, there are people reading this who can say, ‘No, I actually expected my diagnosis of cancer. I knew that my life and health were seriously out of kilter and that it was only really a matter of time before I got seriously ill.’
Most probably, if you are reading this book, you have already been through the initial impact of receiving a diagnosis of cancer. However, if you are waiting for test results, it is important that you are protected at that moment of greatest vulnerability. Try to take someone with you, and ask for the privacy and time you need with the doctor to enable yourself to take on board fully the information you are being given.
Getting support while waiting for test results
If you are waiting for test results, what support do you need to help you through this tense time?
• A talk with my GP
• A talk with my practice nurse, health visitor, social worker or practice counsellor
• A talk with the consultant or hospital support team
• A talk with a private counsellor
• A talk with a spiritual guide
• Being able to confide in a friend or family member
• Being able to tell colleagues at work and arrange to be excused from normal duties
• Being able to take time off to go into ‘retreat’.
If you have you been waiting more than a week for test results, it is reasonable to seek help to find out what has happened to your results. You could try telephoning your GP, the practice nurse or your consultant’s secretary. Ask them to chase your results for you. Make it absolutely clear that you wish to receive your results over the telephone or face to face from one of your medical team.
The moment of truth
The time will come for you to get your test results. If you are expecting bad news, it may be helpful to find out before your appointment with the consultant what kind of assistance is available from a member of the support team (if there is one) or a specialist nurse at the hospital. This is particularly relevant if you live alone, have no close partner or confidante and nobody around to look after you and see you through your vulnerable period after you get home. You may also wish to find out what support is available from the GP’s surgery, the local community nurses or hospices, counsellors, skilled volunteers, support groups, chaplains, spiritual helpers or psychologists. Quite often, resources are to hand which busy doctors and nurses forget to tell you about. So, it is advisable to do some homework in advance if you are at all worried.
Finding Out What Support Is Available at the Hospital
This information is available from the clinical staff (nurses and clerks) where you go to see the consultant, from the cancer or unit information centres (if they have these), and from those in charge of the surgical wards, and chemo-/radiotherapy treatment units.
Getting Support When You Receive Your Results
Ask yourself whether you prefer to be alone to get your test results or with a supporter. If you do take a supporter, who will you ask to accompany you?
If you prefer to go alone or have no choice, who can be at the end of a phone to support you or stay with you overnight if the news is bad? Is this arrangement confirmed? You can celebrate with them, too, if the news is good.
If you want someone to be with you after the appointment, let him know the time of your appointment and arrange where you can meet when you are finished. Ideally, arrange to have him pick you up if you need support.
Working with Your Doctors (#ulink_c462ac00-235d-50d0-acbe-bdd4d73c07a1)
Establishing the best relationship with your doctors – whether that is your GP, surgeon, oncologist or radiotherapist – will be very important for your ongoing security and peace of mind. You may be lucky and find an enlightened doctor who will help you obtain the best integrated medicine, but you may find yourself in a position where you need to gently, but firmly, inform those who are caring for you as to your values and needs. It is hard to have to do this at the point when you are so vulnerable, and would like and expect the care you get to be completely appropriate. However, as with any new relationship, unless you make your needs and feelings clearly known, it will be difficult for others to arrive at any appropriate responses.
It is important to remember that doctors are there to serve you and not the other way round! You have a right to the proper time, attention and care from your doctors and, if for any reason you do not feel comfortable with the consultant you have been referred to, you should go back to your GP and ask to be referred to someone else. We now live in a time when healthcare services are supposed to be patient-centred, so it is essential that you are satisfied with the service you are getting. If not, you need to register this with the cancer services manager in your area or hospital – otherwise, things will never improve.
Right from the start, it is important that your consultant treats you as an equal partner in your healthcare management. If you have taken on board what has been said at the very beginning of this book, you will have already realized that you are a vital member of your cancer management team. This view is backed up by leading UK oncologist Professor Karol Sikora and by the scientific evidence showing how strong a survival advantage is experienced by those who are active in their own defence.
You want to be treated as an individual, so it is useful to let the doctor know:
• how you are viewing your situation and the way you are choosing to deal with it
• how much information you want to be given
• how hard you want to fight your cancer and to what lengths you are prepared to go medically
• if you prefer not to have medical treatment or to stop the treatment you are having
• how you are reacting emotionally to your situation and how well you are coping (or not)
• which treatments (if any) you are not prepared to have
• whether you are ready emotionally and physically to start treatment.
It is important that you:
• take full charge of your situation, never allowing yourself to be railroaded into any treatment decision
• let the doctor know your current situation, values, needs or desires which may affect your treatment decisions
• ask for understanding, flexibility and help if at any time you feel too vulnerable to have treatment
• ask for the support you need
• explain (or seek professional help to explain) to your doctor the science and theory underpinning any approaches you may be using as a complement or alternative to medical treatment
• ask your doctor to be tolerant of and support the choices you are making with regards to your healthcare.
It may cheer you to know that there is an American study that proves that ‘difficult’ patients do best and survive longer. One support group even had T-shirts printed saying ‘I am a difficult patient’ to wear on hospital visits to wake up the medical team. I’ve even heard of a woman who always attended her outpatient appointments in a ballet tutu so she would be remembered and treated as an individual!
This may be too drastic a step for you, but it is a good idea to try to establish a personal rapport with the team looking after you – even if it is because you are always the one asking the searching questions or making your needs known. Humour is, of course, always the best way, and the combination of wit, cunning, being well prepared, assertive and funny is irresistible.
Your aim is to:
• obtain all the appropriate information about your situation
• be given the time to digest and react to this
• make informed consent to treatment only when you have truly understood what the treatment entails, and its potential benefits and side-effects compared with other treatments on offer
• prepare yourself well for treatment, building up your belief in the power of the treatment with visualization and affirmation
• embark upon your treatment feeling fully confident that you have picked the very best course of action for you.
Remember, too, that if you are not happy with your consultant or his opinion, you have the right to ask for a second opinion.
Information Gathering to Find Out What Treatment Options Are Available (#ulink_1fd75fa0-39f5-547a-ba86-d2b71880968b)
Knowing the right questions to ask
To get the information you want, you need to ask the right questions. Knowing what these questions are is difficult unless you have a basic understanding of cancer as a disease. A full explanation of cancer and its treatment is given in Chapter 4 for those who desire the full details. In essence, the information you need in order to ask the right questions is as follows:
• There are as many different types of cancer as there are types of cells in the body. Cancer arises from a single cell in which genetic material has been damaged. The damage allows the cell to replicate and spread out of control. As these ‘wild’ cells continue to grow, a lump or tumour is formed – this is known as a primary cancer. If the cell that started to grow out of control originated from breast tissue, this will be a breast cancer; if it was a bone cell, it will be a bone cancer, and so on.
• As the tumour grows, it may begin to invade the local blood and lymphatic vessels. At this point, cells may break off from the main tumour and travel to nearby lymph nodes, which may also become swollen because of the cancerous tissue that starts to grow in them. From there, the cancer may travel even further afield through the bloodstream or lymphatic vessels to distant sites in the body. There are certain preferred sites where these cells will become lodged, leading to a possible secondary cancer, or metastases, to start growing – for example, breast cancer secondaries can show up in the bones, lungs, liver or brain.
When a doctor is initially assessing the cancer, he will try to establish:
• the histology or type of the tumour – the cell type of origin of the cancer
• the grade or degree of aggressiveness of the tumour
• the stage of the disease – whether the tumour is still at its primary site or whether it has spread locally from the tissue of origin to nearby lymph nodes or even further afield to form secondaries or metastases
• whether there are any special markers (such as blood tests) by which its progress can be measured, or unique characteristics, such as being hormone-positive.
For most tumours, stage one means there is a primary only; stage two means the primary has begun to invade the blood vessels locally; stage three means that the tumour has spread to nearby lymph nodes; and stage four means that it has metastasized throughout the body. These stagings will differ somewhat from one type of cancer to another.
To diagnose and grade the tumour, the specialist will take a sample of the tumour tissue, usually by taking a biopsy. The tissue sample is then studied under the microscope to determine just how aggressive the cells are, and the results will appear on a histology, pathology or histopathology report. Cancer cells are described as well differentiated if they still closely resemble the cell of origin – in other words, a well-differentiated cancer of the breast will contain cells easily recognized as having originally arisen from breast tissue. Because the cells are also still similar in nature to normal breast tissue cells, the tumour would also be described as slow-growing and low-grade.
At the other extreme, the tumour cells may be barely recognizable as breast tissue cells because they had become ‘wild’. Such cells would then be described as poorly differentiated, and the tumour as fast-growing or aggressive and high-grade. Again, the grading system varies with different types of cancer, but most tumours will be graded on a scale of one to four.
Staging the tumour means having further screening tests done after a positive biopsy. These may be blood tests, X-rays and/or ultrasound, CT (computed tomography) or MRI (magnetic resonance imaging) scans of the parts of the body to which the cancer may have spread. How much you wish to know will also affect how much screening you allow your doctors to do. Some consultants, on discovering a primary tumour, will leave no stone unturned in looking for possible secondaries. Other consultants take a much more passive view, waiting until there are symptoms before looking for the presence of metastases.
Generally speaking, there is not much point in undergoing extensive screening unless it will potentially change the treatment being offered. For example, if the chemotherapy for a primary cancer is the same as for a similar cancer that has already spread, your consultant may not think it necessary to carry out widescale screening. But you may wish to know if there are secondaries, as this may significantly change your approach to the cancer and your life choices. So, you will need to be clear with your doctor as to just how far you want him to go with this process and how much information you wish to be given.
To get a clear picture of what you are dealing with, you need to find out:
• the type of cancer you have or its histology
• the stage of the cancer or how far it has spread
• the grade of the tumour or how aggressive it is
• the markers of your tumour by which the effectiveness of treatment or progress of the disease can be measured
• if the tumour is hormone-positive.
Once you have this information, you will then be armed, if you so choose, to go away and read about the cancer you have and discover the possible treatment options for your cancer type, stage and grade.
The exception is in the case of tumours of the blood cells. These are the leukaemias, in which there is no solid tumour because the cell that has grown out of control is one of the various types of white blood cells. The way this sort of tumour is diagnosed is by performing blood counts or looking at bone marrow. These tests might reveal that one cell type is growing very fast at the expense of other blood cells, the levels of which may be lower than normal. With leukaemias, classification is in terms of whether the illness is chronic (slow-growing) or acute (fast-growing).
Depending on how much information you wish to be given, you might ask your doctor for answers to some or all of the following questions:
IF YOU DO NOT WANT TO KNOW THE ANSWERS TO THESE QUESTIONS, TELL THE CONSULTANT AND GP WHAT YOU DO and DO NOT WANT TO KNOW.
• What type of primary cancer do I have (or what is the histology of the tumour)?
• How large is the primary site?
• Has it spread to the lymph nodes draining the site from which it has arisen?
• Has it spread elsewhere in the body, and what is its stage (1, 2, 3 or 4) (or how far has the tumour spread)?
