Leukaemia

Sometimes people have found out that they had leukaemia without ever knowing there was a problem, until they saw their doctor for something else.

However, there are a number of symptoms you should look out for, including:

• feeling really tired or short of breath
• low levels of iron in the blood (anaemia)
• sepsis, also known as blood infection
• infection or high temperature that doesn’t get better
• abnormal bleeding/bruising that is unusual for you
• sore or bleeding gums that don’t get better
• bone pain that you can’t explain
• losing weight without meaning to
• swollen belly
• lumps or swollen lymph nodes
• night sweats.

Having these symptoms may not mean you have cancer, but it is important to check. 

If you have any of these problems, or are worried about something else, yarn with your doctor, nurse or Aboriginal and/or Torres Strait Islander health worker.

You won’t know if you have leukaemia until your doctor has yarned with you, done a physical examination and completed some tests. The tests might include:

• blood tests
• a test on your bone marrow, which usually means they put a needle into a bone in your hip and take a sample
• genetic tests, which are usually a blood test
• a lumbar puncture, which is a test on the fluid in your spine
• tests such as a CT scan or MRI scan to see what your insides look like  
• biopsy of a lump or growth, usually a lymph node which is looked at under a microscope.

Most people who have these tests find out they don’t have cancer, but it’s important to check.

If you have leukaemia, you might be told it’s at a certain stage. This describes whether or not it has spread to other parts of your body, and how far.

Different systems are used to classify the stage of leukaemia compared to cancers that form solid tumours.

With all stages of leukaemia, there is plenty of treatment and support that can help you, including traditional medicine and practices like ceremony and being on Country.

Read more about staging for leukaemia.

There are six main types of leukaemia:

• acute lymphocytic leukaemia (ALL)
• acute myeloid leukaemia (AML)
• chronic lymphoblastic leukaemia CLL
• chronic myeloid leukaemia (CML)
• hairy cell leukaemia
• chronic myelomonocytic leukaemia (CMML)

Acute lymphocytic leukaemia is more common in children. All the other types of leukaemia are much more common in adults.

Read more about types of leukaemia. 

There are a number of ways to treat leukaemia. The main ones are chemotherapy, radiotherapy and targeted therapies. Some people have surgery, a stem cell transplant, leukapheresis or immunotherapy. If you have leukaemia, you might need one of these, or a combination of them.

Yarn with your doctor, nurse or Aboriginal and/or Torres Strait Islander health worker about which treatment you might have. You can also discuss including traditional healing, bush medicines and cultural practices into your treatment plan.

Surgery

Surgery is not usually used to treat leukaemia, but some people with leukaemia may need to have their spleen removed. This is because the spleen has swollen up and is pressing on nearby organs.

Your spleen is in your belly, under your ribs on the left. You can survive without a spleen.

Surgery is a procedure that involves staying in hospital and having an anaesthetic and an operation.

Yarn with your doctor, nurse, Aboriginal and/or Torres Strait Islander health worker or social worker. If surgery requires you to travel away from home and your family, assistance is available for travel and accommodation for you and your family.

Read more about surgery.

Radiotherapy

Radiotherapy, also called radiation therapy, uses X-rays to destroy cancer cells in one part of your body.

Radiotherapy is not usually a major treatment for leukaemia, but it is sometimes used to treat leukaemia that has spread to the central nervous system or testicles, or for other reasons. Radiotherapy can be used to help pain in bones where leukaemia has spread.

Most people who have radiotherapy have it 5 days a week for 4-6 weeks, and each session can take 15 minutes. But it might be different for you.

You can only have radiotherapy in cities and some big towns – see this list. If your doctor thinks radiotherapy would help, and you don’t live near a radiotherapy site, assistance is available for travel and accommodation for you and your family. Yarn with your doctor, nurse or Aboriginal and/or Torres Strait Islander health worker.

Read more about radiotherapy.

Chemotherapy

Chemotherapy, or ”chemo”, involves you taking strong drugs to kill the cancer cells.

Many people have chemo in cycles – such as every day for two weeks, then a week off. Or two days every two weeks, or one day every three weeks. Some people have chemotherapy tablets at home, but most need to go to a hospital or clinic to get chemo through a drip.  You may also need to have chemo at the same time as the radiotherapy. But you usually don’t need to stay in hospital for chemo.

Most chemo comes as injections into your arm or hand that drip in over a few hours and some need you to take home a small bottle home for two days then come back to take it off again. If you’re having chemo, your doctor will tell you exactly how it will work for you.

Chemo can make some people feel sick for a while, but there are things they can do to help. Yarn with your doctor, nurse or Aboriginal and/or Torres Strait Islander health worker. Mob who have had chemo say that combining medical treatment with traditional healing, bush medicine, Men’s Business, Women’s Business and cultural practices help with managing side effects.

Read more about chemotherapy and side effects.

Targeted therapies

Targeted therapies are newer drugs that try to stop the cancer growing. Targeted therapies attack cancer cells without harming healthy cells. If your doctor thinks they might help, here are some questions to ask. 

Read more about targeted therapy.

Stem cell transplant

Stem cell transplant is also known as bone marrow transplant. Stem cell transplant usually happens after chemo. The chemo might be given in high doses, to kill all the cancer cells, and this can also destroy the bone marrow. A stem cell transplant can restore the bone marrow to allow new healthy cells to start being produced. The stem cells might be from your own body, or from someone who has donated theirs to be used.

A stem cell transplant can mean a stay in hospital of 3-4 weeks. Yarn with your doctor, nurse or Aboriginal and/or Torres Strait Islander health worker.

Read more about stem cell transplant.

Leukapheresis

Leukapheresis means you are hooked up to a machine through a needle placed in your arm. The procedure takes out cancer cells by passing some of your blood through the machine.   

Read more about leukapheresis.

Immunotherapy

Immunotherapy is treatment with drugs that help your immune system attack the cancer cells. Immunotherapy is given in your arm through a vein.  It is usually given in cycles of once every few weeks. You will need to go to a hospital or clinic to have this treatment.

Read more about immunotherapy.

It is important for you to understand why you are getting the treatment your doctor choses and how it is supposed to help you. Different treatments try to do different things. It depends on what cancer you have, and whether it has spread to other parts of your body, and where you live, and what you want. Ask your doctor or specialist if the treatment they suggest:

• is meant to cure you, by getting rid of the cancer and stopping it spreading, or
• won’t cure you, but is meant to prolong your life, or make you feel better.

Your doctors will yarn with to you and explain this. You can yarn with them and tell them what you think, and what you want. Some people will want to try everything possible to stay alive. Others want simpler treatments, or don’t want to leave Country for treatment, or don’t want any treatment. It’s your choice.

This is also a good time to discuss including any traditional healing, bush medicine or cultural practices you want to include in your treatment plan. You can also talk to another doctor to help you decide.

It can take time to decide about treatment. There are usually some options to hear about and choices to make.

It can be helpful to write things down, have someone else come to appointments to help remember information. Mob who have been diagnosed with cancer say that yarning with trusted family members and friends, Elders or a counsellor is helpful as well as spending time on Country.

Yarn with your doctor, specialist, nurse or Aboriginal and/or Torres Strait Islander health worker.

Read more about treatment.

Always ask about the cost of treatment. Many treatments are free through public hospitals, but some are not. Ask your doctor, nurse, health worker or social worker.

Learn more about financial support.

It all depends on the type of treatment you’re having. People will have treatment for different durations of time.

After treatment is finished, your doctors will keep in touch with you to check how you’re going. Your cancer journey gives you an opportunity to build trust and safe relationships with your doctors and medical team that may last for many years.

It is not possible to say what causes leukaemia in a single person. We do know there are some features that are more common in people who develop leukaemia. These features are called ”risk factors”.

But it is usually hard to be sure whether a risk factor contributed to the development of the cancer. And having one or more risk factors for leukaemia does not mean that someone will develop this cancer. In fact, many people who have leukaemia have no obvious risk factors.

Risk factors across different types of leukaemia include:

• exposure to high levels of radiation
• exposure to certain chemicals
• sex of the patient – some types of leukaemia are more common in men than in women
• smoking
• having an identical twin or another blood relative with a certain type of leukaemia
• certain genetic syndromes
• certain blood disorders.

There are a few known risk factors for childhood leukaemia.

Read more about risk factors for different types of leukaemia.

If you have any of these risk factors or you’re worried about your risk for leukaemia, yarn with your doctor, nurse, Aboriginal and/or Torres Strait Islander health worker.

Clinical trials might be an option for you. Talk to your doctor to help you decide if taking part is a good option. Read more about clinical trials

Read more detail on leukaemia here.

For support, contact Leukaemia Foundation or call 1800 620 420.