Sometimes it is difficult to decide on the type of treatment to have. You may feel that everything is happening too fast, or you might be anxious to get started. Check with your specialist how soon treatment should begin – it is often important to start treating acute leukaemia quickly. Ask the specialist to explain the options, and take as much time as you can before making a decision.
Learn more about:
- Knowing your options
- Recording the details
- Asking questions
- Considering a second opinion
- Deciding on treatment
- Joining a clinical trial
- Video: What are clinical trials?
Know your options
Understanding the disease, the available treatments, possible side effects and any extra costs can help you weigh up the options and make a well-informed decision. Check if the specialist is part of a multidisciplinary team and if the treatment centre is the most appropriate one for you – you may be able to have treatment closer to home, or it might be worth travelling to a centre that specialises in a particular treatment.
Record the details
When your doctor first tells you that you have leukaemia, you may not remember everything you are told. Taking notes can help. If you would like to record the discussion, ask your doctor first. It is a good idea to have a family member or friend go with you to appointments to join in the discussion, write notes or simply listen.
Ask questions
If you are confused or want to check anything, it is important to ask your specialist questions. Try to prepare a list of questions before appointments. If you have a lot of questions, you could talk to a cancer care coordinator or nurse.
Consider a second opinion
You may want to get a second opinion from another specialist to confirm or clarify your specialist’s recommendations or reassure you that you have explored all of your options. Specialists are used to people doing this. Your GP or specialist can refer you to another specialist and send your initial results to that person. You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. You might decide you would prefer to be treated by the second specialist.
It’s your decision
Adults have the right to accept or refuse any treatment that they are offered. For example, some people with advanced cancer choose treatment that has significant side effects even if it gives only a small benefit for a short period of time. Others decide to focus their treatment on quality of life. You may want to discuss your decision with the treatment team, GP, family and friends.
For more on this, see Cancer Care and Your Rights and listen to our podcast on Making Treatment Decisions.
Should I join a clinical trial?
Your doctor or nurse may suggest you take part in a clinical trial. Doctors run clinical trials to test new or modified treatments and ways of diagnosing disease to see if they are better than current methods.
For example, if you join a randomised trial for a new treatment, you will be chosen at random to receive either the best existing treatment or the modified new treatment. Over the years, trials have improved treatments and led to better outcomes for people diagnosed with cancer.
You may find it helpful to talk to your specialist, clinical trials nurse or GP, or to get a second opinion. If you decide to take part in a clinical trial, you can withdraw at any time.
For more information, see Clinical trials and research. To find current clinical trials near you, visit Cancer Institute NSW or Australian Cancer Trials.
Video: What are clinical trials?
Medical Oncologist Dr Elizabeth Hovey explains what clinical trials are and how they can improve cancer treatment.
More resources
Dr Jonathan Sillar, Haematologist, Calvary Mater Newcastle Hospital; Dr Scott Dunkley, Haematologist, Royal Prince Alfred Hospital and Chris O’Brien Lifehouse; Sharon Frazer, Consumer; Dr Robin Gasiorowski, Staff Specialist, Haematology, Concord Hospital; Prof Angela Hong, Radiation Oncologist, Chris O’Brien Lifehouse, and Clinical Professor, The University of Sydney; Yvonne King, 13 11 20 Consultant, Cancer Council NSW; Heather Mackay, Clinical Nurse Consultant – Haematology, Westmead Hospital; Katelin Mayer, Clinical Nurse Consultant, Cancer Outreach Team, Nelune Comprehensive Cancer Centre.
View the Cancer Council NSW editorial policy.
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