Acute leukaemia in children, adolescents and young adultsYour guide to best cancer care

It can be overwhelming after being told that you or your child have or may have acute leukaemia. A lot can happen quickly, and you might have lots of questions, like 'What happens next after a diagnosis?'

This support resource can help to guide you, your family, and your friends through this experience.

Information and support

If you need additional information or would like support, you can visit the leukaemia page or call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

To speak with an experienced health professional who can provide you with disease-specific information, answer questions, talk through concerns and connect you to blood cancer support groups, call 1800 620 420 or visit the Leukaemia Foundation page. The team can also help with practical concerns such as accommodation close to treatment, transport to appointments and financial assistance.

Canteen provides information, individual case management, counselling, therapeutic programs and education and career support for adolescents and young adults (12–25 years) who have been affected by their own or a family member’s cancer diagnosis. Canteen also provides support to the parents of these young people. You can also call 1800 835 932.

Another resource for free practical, emotional and financial support for all members of families with a child with cancer (aged 18 or younger) is Redkite. Support includes counselling for all members of the family (including children), peer support groups, financial assistance and help to connect with other relevant support services. You can also call 1800 592 410.

More information is available in the ‘Resource’ section of the optimal care pathway for acute leukaemia in children, adolescents and young adults.

If you need a translator, call TIS on 13 14 50 or visit the TIS National website.

Symptoms

Your / your child’s general practitioner (GP) or other primary care physician will do a check-up to see if they can find what is making you / your child unwell. They will ask about any symptoms such as persistent unexplained fever or bruising, extreme fatigue, recurring infections, bone pain with no obvious cause, inability/refusal to walk and/or pale appearance.

Initial tests you may have

Referrals

If the GP suspects acute leukaemia, you / your child will be referred to a haematologist or medical oncologist (specialist) at a public hospital or in private practice for more tests. Haematologists are doctors highly trained in conditions that affect the blood and bone marrow.

You can bring a family member or friend with you to your appointments.

Timeframes

If acute leukaemia is suspected or confirmed, referral to a specialist should happen immediately. This may be done by telephone.

Travel to access tests, treatment and care

You may have to travel to see a specialist, undergo tests or access treatment, especially if you live in a rural or regional area. In some cases, you may have to leave home for an extended period. Accommodation and transportation support services are available, and it is encouraged to have family support with you whilst you undergo treatment.

Mental health and emotional well-being

A blood cancer diagnosis can affect your mental and emotional well-being. Patient support organisations, your GP or another health professional (e.g. a psychologist or social worker) can help you process your diagnosis and develop strategies to cope. They can help you access a mental health treatment plan if required.

Helpful tips:

Let the doctor know what is most important to you / your child in a specialist (e.g. that they specialise in leukaemia, cost, location, bedside manner, expertise).

Ask the GP to recommend trusted sources of information and support – these can be shared with family and friends too.

Talk to the GP/specialist about how to manage other health conditions during your cancer treatment and let them know if you have any concerns.

It’s a good idea to keep a written diary or digital record of treatment details and appointments with the GP and specialists. You can ask permission to record appointments. It’s also helpful to bring a list of questions and ask for a written treatment plan. This can be an important source of information for later in life.

Don’t ignore new signs and symptoms. Alert the GP or specialist. Trust yourself. It’s OKAY to be persistent.

The specialist will do more tests to see if you or your child have acute leukaemia. This process of working out if you have a medical problem is called making a diagnosis. You might have one test or a mix of tests:

Timeframes

Tests are often performed on the same day you go to the specialist blood cancer service. However, after being assessed by the specialist, sometimes procedures are delayed to the nearest suitable day.

Your specialist will discuss treatment options for acute leukaemia. You will be treated by a team of experts, and you may need more than one treatment type to get the best results. The team will work with you and your family or carer to plan your treatment.

You might have one treatment or a mix of treatments:

Chemotherapy. Drugs are used to kill cancer cells and stop the cancer growing.

Radiation therapy. This uses x-rays to kill cancer cells and stop the cancer growing.

Allogeneic stem cell transplant. This replaces the blood-forming cells that have been destroyed during intensive chemotherapy or radiotherapy. Stem cells are collected from the blood of a suitable donor. These stem cells are cells that help the body grow new healthy blood cells. When your chemotherapy is finished, the stem cells that were collected are injected into your bloodstream through a drip into a vein.

Immunotherapy. This is a type of cancer treatment that helps the body’s immune system fight the cancer.

Targeted therapy. This uses drugs to attack specific features of cancer cells to stop the cancer growing.

For more information, visit Cancer Treatment. Supportive care (treatment or services that support you through a blood cancer experience) is also available, often delivered through a multidisciplinary team that may include nurses, pharmacists, psychologists, physiotherapists and dietitians.

Timeframes

Treatment should start as soon as possible.

For more information on clinical trials, visit the Australian Cancer Trials page, or the national Cancer Cooperative Trials Group (CCTG) for childhood and adolescent cancers (ANZCHOG).

For relationship support and, if necessary, referral to counselling services, visit the relationships and sex page on Leukaemia Austalia.

Recovery

Blood cancer treatment can cause physical and emotional changes. The ongoing care and support throughout and after treatment for acute leukaemia may vary depending on your / your child’s age and the treatment received.

Follow-up care plan

Your healthcare team will work with you to make a plan for you and your GP. This plan will explain:

• who your main contact person is after treatment
• how often you should have check-ups and what tests this will include
• understanding and dealing with the potential side effects of treatment
• how to get help quickly if you think the blood cancer has returned or is worse
• how to look after your / your child’s overall health and wellbeing

Many people worry that their blood cancer will return. The specialist and healthcare team will talk about your / your child’s needs and can refer you to other health professionals and community support services.

Other information you may get:

• signs and symptoms to look out for if the cancer returns
• side effects of treatment and the specialists you may need to see
• how to make healthy lifestyle choices to give you the best chance of recovery and staying well

For more information, visit After Cancer Treatment.

Sometimes, acute leukaemia can return after treatment (relapse) or doesn’t respond to conventional treatment (refractory). Acute leukaemia can come back in the same way or in different ways.

If leukaemia returns, treatment will depend on when the leukaemia returned in relation to previous therapy, and what this therapy was. The treatment will be the best available therapy for the relapsed disease. In many cases relapsed leukaemia remains curable.

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about your future treatment and medical needs.

Advance care directive

Sometimes known as a living will, an advance care directive is a legally binding document that you prepare to let your family and healthcare team know about the treatment and care you might want or not want in case you become too unwell to make those decisions yourself.

For more information, visit Advance Care Planning Australia.

Palliative care

Your specialist may refer you / your child to palliative care services, but this doesn’t always mean end-of-life care. Today, people can be referred to these services much earlier if they’re living with cancer or if their cancer returns. Palliative care can help you to live as well as you can, including managing pain and symptoms. This care may be at home, in a hospital or at another location you choose.

Speak to your GP or specialist or visit Palliative Care Australia.

Making treatment decisions

You / your child may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer.

For more information, visit Advanced Cancer Treatment.

Decisions about cost

You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be.

If you have concerns about costs, talk to your healthcare team or a social worker about:

• being bulk-billed or being treated in the public system
• help with accommodation during treatment
• the possible financial impact of your treatment

You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.