DEALING WITH YOUR MEDICAL TEAM: TALKING TO DOCTORS
In the early stages, you may feel that you simply don’t know what questions to ask about your cancer and treatment, beyond a general sense of ‘What’s going to happen to me?’ When your doctors ask you, ‘Do you have any questions?’ it can be difficult to know where to begin, and how to put your fears and queries into words without appearing foolish or stupid. Most people are starting from a base of no knowledge at all on the subject of their cancer, so it may be most constructive to begin with some very basic questions, which you can develop as your knowledge builds up. For example:
How do your doctors know that you have cancer?
What type of cancer do you have and how advanced is it?
How does it spread and how will it affect your body and the functioning of your organs?
What type of treatment is proposed?
How long is the treatment likely to take? (weeks? months?)
What is the hoped-for outcome of the treatment (although it is never possible for doctors to give guarantees)? Is a cure or substantial remission a possibility or is the treatment palliative (aiming to alleviate but not to cure)?
How will the progress of your treatment be measured?
Who is the doctor who will be in charge of your treatment? Are there any other doctors you will see on a regular basis?
Where will you receive your treatment? Will you have to stay in hospital?
Asking a few specific questions such as these will often help to prompt further information from your doctor. It is easy otherwise for a consultation to speed by before you feel sufficiently at ease to really start talking. Remember that you don’t have to talk in medical jargon, although you do need to be clear. It’s perfectly acceptable to say, «I have a sharp pain in my stomach’ – you are not expected to be able to perform self-diagnosis. On the other hand, it is helpful if you know the names and doses of any drugs you are taking (for pain relief, anti-nausea, etc), so that your doctor can check on their effectiveness and whether any prescriptions need to be changed. This is less daunting than it sounds, as you will be given a card containing details of your drugs, which should be kept up to date. It is much easier if you can discuss these by name rather than ‘the big pink capsules’ or ‘the little yellow pills’.
The question many people consider the most important – and the most difficult to ask – is on the subject of your future prognosis. In the past, a cancer diagnosis was an almost certain death sentence, and many people still make this association immediately on hearing their diagnosis. However, treatments have progressed tremendously in recent years, and it may be that your cancer can be treated effectively. This depends, of course, on your type of cancer, how advanced it is and how you as an individual respond to treatment. When you ask about your likely prognosis, your doctor may use terms whose meaning is not obvious to you, but which have a specific connotation in this context. These include ‘cure’, ‘remission’ and ‘relapse’.
A cure means that all evidence of your cancer has been eliminated completely and that it will not return. How this is assessed depends on the type of cancer in question. For example, testicular cancer tends to recur within five years, and most often within two or three. So if your initial treatment is successful and a period of five years passes in which no cancer is detected, you should be considered cured. Other cancers recur in different timescales, and your doctor will be able to advise you about this.
• Remission
Remission means that the symptoms of your cancer have disappeared or lessened, i.e. that the cancer has got smaller. A partial remission means that the cancer has shrunk by at least half. A complete remission means that the evidence of your cancer has disappeared completely and it is no longer detectable. This is not the same as a cure, as the cancer may return in the future. If it does not return within a given timespan, you may be considered cured.
• Relapse/Recurrence
This means that following your treatment, some cancer cells still remained in your body and started to grow into a detectable cancer again. It may be that these remaining cancer cells were undetectable after your initial treatment but have become active again later. This can occur in the months after treatment has ended or may not happen for some years. Your doctors will advise you about the likelihood of a relapse occurring.
You might be eager to know about your chances of achieving a cure or substantial remission, but this may be tempered by a fear of hearing bad news – for example, that only a short period of remission is expected to be achieved by treatment. Your doctors may volunteer information about the anticipated success of your treatment, based both on statistical information and the specific details of your own case.
Another term you will hear doctors refer to is the ‘stage’ of your cancer, which describes the extent, if any, to which it has spread to other parts of your body. There are four stages. Stage I means there is no spread and the cancer is confined to the primary site. Stage IV means that there is extensive spread beyond the primary site. Stages II and III fall between the two extremes.
Some people want to be kept fully informed about the progress of their treatment. You may decide, on the other hand, that you do not wish to be told too much medical detail about your cancer and treatment, especially at first. This is a very personal choice and is entirely your decision. Your doctors should be sensitive to this, although they do need to ensure that you understand what is happening during your treatment and afterwards.
It is worth remembering that while you will be looking for definitive answers to your questions, it may sometimes be difficult for your doctors to provide them. This does not mean that they are avoiding your questions, or that there are gaps in their knowledge. The treatment of cancer holds many uncertainties, and it would be wrong for doctors to be asked to provide guarantees about the future, although it is natural for you – and your family – to seek reassurance. It is useful to find out at an early stage which doctors you will have greatest contact with, so that you know who is likely to have the most knowledge about your case and is therefore in the best position to answer your questions.
In the very early stages, you may feel that you want to know as little about your cancer and treatment as possible and that additional information and knowledge are pointless because they can make no difference to your condition. This is a perfectly understandable reaction as you and your family try to come to terms with your diagnosis. As the initial shock recedes, however, you are likely to find that it is helpful to start learning a little more about your cancer. There are many books and leaflets available, covering a huge range of cancer-related topics. For some basic factual information, your hospital should be able to provide you with booklets produced by the organization BACUP (British Association of Cancer United Patients). These cover both specific cancers and related issues, such as cancer treatments and diet. Books and leaflets have a useful role as you can refer to them when you please.
If you are unclear about information you have received, you should never be afraid to ask your medical team for clarification. Similarly, don’t worry about asking the same questions more than once: when you are under stress, it is sometimes difficult to absorb information as easily as usual and your medical team will understand this.
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