Acute lymphoblastic leukaemiaYour guide to best cancer care

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

There are two types of ALL, depending on which young (immature) white blood cells (lymphocytes) are affected and are rapidly growing and dividing out of control; these are B-cell ALL and T-cell ALL. 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 healthcare professional who can provide you with disease-specific information, answer your questions, talk through your concerns, and connect you to blood cancer support groups, call 1800 620 420 or visit the Leukaemia Foundation homepage. The team can also help with practical concerns such as accommodation close to treatment, transport to appointments, and financial assistance.

For more information about ALL, visit the ALL page from Leukaemia Foundation.

More information is also available in the ‘Resources’ section of the optimal care pathway for ALL.

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

Symptoms

Your general practitioner (GP) or other primary care physician will do a check-up to see if they can find out what is making you unwell. They will ask you about any symptoms you might be having such as fatigue, weakness, dizziness, pale appearance, chest pain when exercising, nose bleeds, easy bruising, fevers with severe and/or recurrent infections, bone and/or joint pain, or heavy menstrual bleeding. Pain management for symptoms such as bone and joint pain may be necessary at the time of diagnosis.

Initial tests you may have

Referrals

If your GP thinks you may have ALL, you will be immediately referred to a specialist cancer centre.

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

Timeframes

Your general practitioner should begin investigations immediately if ALL is suspected. If you are clinically unwell, immediate referral to an emergency facility is recommended without waiting for blood results. ALL is always a medical emergency as it progresses quickly, and treatment will need to begin soon after diagnosis.

ALL is always a medical emergency, and you will be immediately referred to an emergency facility to begin treatment.

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.

See further information on Leukaemia Foundation’s accommodation and transport support by visiting their accommodation services page and transport services page.

Mental health and emotional well-being

A blood cancer diagnosis can affect your mental and emotional well-being. Many people being treated for a blood cancer experience a range of feelings and it is not uncommon to feel low, depressed, or anxious. Patient support organisations such as the Leukaemia Foundation or Cancer Council, your GP, or another health professional such as a psychologist or social worker can help you 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 haematologist/specialist will do more tests to see if you have sarcoma (bone and soft tissue tumours). 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

You should have most critical results back within 48 hours though some tests may take longer and may come back after treatment has already commenced.

These tests will give the specialist more information about the cancer, such as where exactly it is in your body, if the cancer is growing or has spread, and what stage it is at. This is called staging, which helps to work out the best treatment for you.

Your specialist will talk to you about your treatment options for ALL. You may need more than one treatment type to get the best results, and you may require ongoing treatment to manage your ALL for the rest of your life.

You might have one treatment or a mix of treatments:

Chemotherapy. Drugs that are used to kill cancer cells to stop the cancer growing. Treatment for newly diagnosed ALL generally consists of nine to 12 months of intensive chemotherapy, followed by three years of maintenance therapy. Chemotherapy for ALL can be delivered intravenously (through IV) or orally in pill form.

Allogeneic stem cell transplant (allo-SCT). An allo-SCT is where stem cells are collected from the blood of a suitable donor and put into your blood stream through a drip into a vein.

Radiation therapy uses x-rays to kill cancer cells and stop the cancer growing. It can be considered as an emergency treatment.

Targeted therapy and immunotherapy use drugs to attack specific features of cancer cells and stop the cancer growing.

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

Timeframes

By evaluating your symptoms and test results, your specialist will determine when your treatment should start. For most people with ALL this will be as soon as possible. Radiation should be commenced within 72 hours where preserving the organs is the goal. There may be instances where your treatment could be delayed beyond this timeframe. If this occurs your specialist will discuss this with you.

You can ask your GP for a referral to another specialist for a second opinion.

For more information on clinical trials, visit the Australian Cancer Trials page or search the Australian New Zealand Clinical Trials Register. Participation in a clinical trial is voluntary, and you can choose not to participate in a clinical trial or withdraw from a clinical trial at any point if you wish.

For relationship support and, if necessary, referral to counselling services, visit the relationships and sex page on Leukaemia Austalia. Canteen Australia also provides some helpful information on fertility options after a cancer diagnosis.

You can ask for more time to think about your treatment options, and you can ask your GP for a referral to another specialist for a second opinion.

Recovery

ALL can often relapse, and this can affect your physical, psychological, nutritional, and general well-being. Comprehensive support and side effect management should be part of your routine ongoing care.

ALL survivors may experience inferior quality of life and cancer-related symptoms for up to five years after their diagnosis. Distress, fear of cancer recurrence, fatigue, obesity, and a sedentary lifestyle are common symptoms reported by cancer survivors.

Survivorship care plan

You may need regular ongoing follow-up appointments and care, so your specialist and healthcare team will work with you to make a survivorship care plan for you and your GP. Your survivorship care plan may need to be updated over time if your needs change. 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 potential side effects of treatment
• how to get help quickly if you have an urgent problem
• how to look after your overall health and wellbeing
• what healthcare and community support services are available to you and how to access them

Your specialist and healthcare team will talk to you about your needs and can refer you to other health professionals and community support services.

Other information you get might be about:

• the 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 staying well

For more information, visit After Cancer Treatment.

The highest risk of relapse is within the first three years of starting therapy for ALL, but later relapse can occur. For immediate post-therapy follow-up, the frequency of these appointments will be determined by your specific needs and may range between several times a week and a follow-up every six weeks.

Survivors of ALL generally require regular follow-up appointments for five or more years after cancer treatment finishes and will usually reduce over time for patients in remission.

Follow-up of asymptomatic patients (experience no symptoms) should include regular monitoring of full blood counts and chemistry as well as a complete medical history and physical examinations.

Treatment will depend on how far the cancer has progressed, how fast-growing it might be, and the symptoms you are experiencing.

Options may include:

• Immunotherapies
• Chemotherapy
• Allogeneic stem cell transplant
• CAR-T cell therapy
• Supportive and/or palliative care

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about your future treatment and medical needs. It is important to have this conversation so that you can make your wishes and decisions about your treatment and care known to your doctors and family.

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.

Survivorship

Many people are living longer with cancer, and it is important that people receive ongoing care and support in finding a ‘new normal’, managing general health, the effects of the cancer and/or treatment, and coping with the emotional impact of cancer and fear of recurrence.

Life is not exactly the same as it was before a blood cancer diagnosis. A ‘new normal’ is about living with your blood cancer or living in remission, and creating and maintaining your ‘new normal’ to live as good a life as possible while facing changes such as, but not limited to:

• physical/mental/spiritual
• emotional/relationships/identity/sexuality
• financial, ability to work/return to productivity

Seeking information, tools, and support, and accepting help to manage challenges that arise throughout a person’s cancer experience is very important. Having this support can enable individuals to have a high quality of life and it is important to remember that everyone handles it and is affected differently when diagnosed and treated for a blood cancer.

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.