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
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