Making decisions about acute lymphoblastic leukaemia (ALL) treatment
If you have acute lymphoblastic leukaemia (ALL), you may want to think about the possible advantages and disadvantages of treatment before you make a decision.
Before you have any treatment for acute lymphoblastic leukaemia (ALL), your doctor will explain its aims. They will usually ask you to sign a form saying that you give permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent. Before you are asked to sign the form, you should be given full information about:
- the type and extent of the treatment
- its advantages and disadvantages
- any significant risks or side effects
- any other treatments that may be available.
If you do not understand what you have been told, tell the staff straight away. Leukaemia treatments are complex, so it is normal to need something explained again. It is a good idea to have a family member or friend with you when the treatment is explained to help you remember the discussion.
Most doctors will give you written information about your treatment, including a treatment schedule. This can help you understand your treatment and plan when you may be at home or staying in hospital. If you are not given a schedule, you can always ask for one.
You may sometimes feel that hospital staff are too busy to answer your questions, but it is important for you to know how the treatment is likely to affect you. The staff should be willing to make time for your questions.
If you do not feel ready to make a decision
Treatment for acute leukaemia often has to start very quickly. If you do not feel ready to make a decision about your treatment, ask your doctor how long you can have to think about it.
Without any treatment, acute leukaemia is life-threatening. You are free to choose not to have treatment you are offered, but this can be a serious decision. It is important to tell your doctor or nurse. You do not have to explain why you do not want treatment, but if your team understands your reasons they can give you better advice and support. They will also record your decision in your medical notes.
Treatment for leukaemia has possible benefits but also possible risks. You may want to think carefully about these before you make a decision about your treatment plan.
Treatment that aims to cure leukaemia
You may be offered treatment that aims to cure the leukaemia. This may involve some disadvantages such as:
- some longer stays in hospital – often for several weeks at a time
- short-term side effects that may need treatment
- a risk of permanent side effects such as infertility.
Many people decide to have this treatment because the chance of curing the leukaemia outweighs these disadvantages. However, there is still a risk the leukaemia may not be cured.
Treatment that aims to control the leukaemia
Some people will have treatment that aims to control the leukaemia rather than cure it. This involves lower doses of chemotherapy and a lower risk of side effects. It may also mean less time in hospital. These benefits make this treatment suitable for people who:
- are not fit enough to cope with more intensive treatment
- do not want the risks of more intensive treatment.
However, this treatment is less effective. The leukaemia is less likely to go into remission or to stay in remission.
Your feelings about treatment decisions
There is no right or wrong way to feel about the benefits and disadvantages of treatment. Everyone has different things that are important to them. Your doctor or nurse is the best person to talk to for clear and detailed information about your treatment.
Talking to other people who have already had treatment can also help. Your specialist nurse may know whether there is a local cancer support group, where you can talk to someone who has had similar treatment.
Or you can visit our acute lymphoblastic leukaemia (ALL) forum to talk with people affected by acute lymphoblastic leukaemia (ALL), share your experience, and ask an expert your questions.
Your multidisciplinary team (MDT) uses national treatment guidelines to decide the most suitable treatment for you. Even so, you may want another medical opinion. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion.
Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident that it will give you useful information. If you do go for a second opinion, it may be a good idea to take a relative or friend with you, and have a list of questions ready, so that you can make sure your concerns are covered during the discussion.
Some of the drugs used to treat leukaemia can affect your fertility. Fertility is the ability to get pregnant or make someone pregnant. Your doctor or nurse will talk to you about this before you start your treatment. If you have a partner, you may want them to be involved too.
This is a lot to think about when you are already dealing with leukaemia. Your team may not be able to tell you exactly what will happen. But they will explain how your fertility is most likely to be affected. Some treatments such as stem cell transplants have a high risk of causing permanent infertility.
You may be able to have fertility preservation before treatment for leukaemia. But it is important to remember that treatment usually needs to start quickly, so fertility preservation is not always possible. Women may also be able to have fertility preservation when they are in remission.
Below is a sample of the sources used in our acute lymphoblastic leukaemia (ALL) information. If you would like more information about the sources we use, please contact us at firstname.lastname@example.org
Hoelzer D, et al. Acute lymphoblastic leukaemia: ESMO clinical practice guidelines. Annals of Oncology. 2016. 27 (Supplement 5): v69-v82.
National Institute for Health and Care Excellence. Blood and bone marrow cancer. www.nice.org.uk/guidance/topic/conditions-and-diseases/blood-and-immune-system-conditions/blood-and-bone-marrow-cancers (accessed July 2018).
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Anne Parker, Consultant Haematologist.
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