Making Decisions about Treatment
Sometimes making decisions about what is right treatment for you is very difficult. You may feel that everything is happening so fast that you do not have time to think things through. Some people find that waiting for test results and for treatment to begin is very difficult.
While some people feel they are overwhelmed with information, others may feel that they do not have enough. You need to make sure that you understand enough about your illness, the possible treatment and side effects to make your own decisions. Do not be hurried into making decisions. Waiting a few days will not usually make any difference to the success of your treatment.
If you are offered a choice of treatments, you will need to weigh up the advantages and disadvantages of each treatment. If only one type of treatment is recommended, ask your doctor to explain why other treatment choices have not been advised.
Some people with more advanced cancer will choose treatment, even if it only offers a small chance of cure. Others want to make sure that the benefits of treatment outweigh any side effects. Still others will choose the treatment they consider offers them the best quality of life.
Talking with Doctors
You may want to see your doctor a few times before making a final decision on treatment. It is often difficult to take everything in, and you may need to ask the same questions more than once. You always have the right to find out what a suggested treatment means for you, and the right to accept or refuse it.
Before you see the doctor, it may help to write down your questions. There is a list of questions to ask your doctor at the end of this booklet, which may assist you. Taking notes during the discussion can also help. Many people like to have a family member or friend go with them, to take part in the discussion, take notes or simply listen.
Talking with Others
Once you have discussed treatment options with your doctor, you may want to talk them over with family or friends, with nursing staff, the hospital social worker, psychologist or chaplain, or your own religious or spiritual adviser. Talking it over can help to sort out what course of action is right for you.
A Second Opinion
You may want to ask for a second opinion from another specialist. This is understandable and may be a valuable part of your decision making process. Your specialist or local doctor can refer you to another specialist and you can ask for your records to be sent to the second opinion doctor. You can ask for a second opinion even if you have already started treatment or still want to be treated by your first doctor.
The outlook for brain tumours varies widely, and it is impossible to generalise. It depends on your age, the type of tumour you have, how much of the tumour can be removed, and how well it responds to radiotherapy or (in children) chemotherapy. If you have a benign tumour, which is completely removed, total cure is likely.
The rate of growth and spreading of malignant tumours also varies. Some types of malignant tumour grow and spread rapidly, while others develop slowly over a number of years. Response to treatments also varies a lot.
After treatment some people appear to be completely cured and may live for many years. In many people, however, brain tumours recur.
Where a cure is not possible, treatment can often relieve symptoms and make it possible to lead a good and relatively symptom-free life, sometimes for several years. Recurrence of symptoms after treatment varies from person to person.
All types of brain tumour can occur in children. Some tumours are simple to deal with and easily cured while others are much more difficult to treat and there is much less chance of a cure.
Parents often see the outcome in terms of complete cure or death. While a significant number of children will recover completely, a proportion of children whose tumours are cured or controlled for many years will be left with disabilities. These range from mild learning or behaviour problems to severe physical or intellectual disability.
Taking Part in a Clinical Trial
Your doctor may suggest that you take part in a clinical trial. Clinical trials are an essential part of the quest to find better treatments for cancer. Doctors conduct clinical trials to test new or modified treatments and see if they are more effective than existing treatments. Hundreds of thousands of people all over the world have taken part in clinical trials that have resulted in many improvements to cancer treatment.
To help you make an informed decision about joining the clinical trial, your doctor will discuss the trial and its implications for you. Before consenting to join the trial, you may wish to ask your doctor:
- What treatments are being tested and why
- What tests are involved
- Whether there are any possible risks or side effects
- How long the trial will last
- Whether you will need to go into hospital for treatment
- What you will do if any problems occur while you are in trial
If you join a ‘double blind’ clinical trial, you will be given either the best existing treatment for your condition or a promising new treatment. Treatments are randomly assigned, so neither you or your doctor knows which treatment you are being given but will always be at least the best available.
If you do join a clinical trial, you have the right to withdraw at any time. Doing so will not jeopardise your treatment for cancer. If you do not want to take part in a trial, your doctor will discuss the best treatments available to you.
After treatment, you will need regular check-ups for the rest of your life. To begin with these check-ups will occur several times per year, then you will usually need to have a check-up at least once a year. These check-ups are most important to make sure there is no reappearance of the original cancer and that a new one does not develop.
It is natural to feel anxious about the possibility of further changes developing. Talking over your concerns with your family and your own doctor can be helpful. The regular check-ups will reassure you that all is well. If there are any problems, they can be found early when treatment is most likely to be successful.
It can take time before you feel reassured by check-up visits. You will need to rebuild your confidence in your body and in the future. You may find that you need reassurance from your specialist. This is quite normal. Ask lots of questions if you want to and try to be sure that all your concerns are answered, remember that you are not alone and that your feelings are normal. Be patient with yourself as you find your way to live with having and having had a cancer.