Dr. Daniel - The Cancer Directory

• 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.

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 histologyor type of the tumour – the cell type of origin of the cancer

• the gradeor degree of aggressiveness of the tumour

• the stageof 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 onemeans there is a primary only; stage twomeans the primary has begun to invade the blood vessels locally; stage threemeans that the tumour has spread to nearby lymph nodes; and stage fourmeans 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 differentiatedif 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-growingand 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-growingor aggressiveand 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 testsdone 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.