Life after treatment for acute leukaemia

Adjusting to life after treatment

For most people, the cancer experience doesn’t end on the last day of treatment. Life after leukaemia treatment can present its own challenges. You may have mixed feelings when treatment ends and worry that every ache and pain means the leukaemia is coming back.

Some people say they feel pressure to return to “normal life”. It is important to allow yourself time to adjust to the physical and emotional changes, and to establish a new daily routine at your own pace. Your family and friends may also need time to adjust.

Cancer Connect on 13 11 20 can help you connect with other people who have had leukaemia and provide you with information about the emotional and practical aspects of living well after treatment.

Follow-up appointments

After your treatment, you will have regular appointments to monitor your health, manage any long-term side effects and check that the leukaemia hasn’t come back or spread. During these check-ups, you will usually have a physical examination and may have blood tests, x-rays or scans. You will also be able to discuss how you’re feeling and mention any concerns you may have.

When a follow-up appointment or test is approaching, many people find that they think more about the cancer and may feel anxious (sometimes called “scanxiety”). Talk to your treatment team or call Cancer Connect on 13 11 20 if you are finding it hard to manage this anxiety.

Check-ups will become less frequent if you have no further problems. Between follow-up appointments, let your doctor know immediately of any symptoms or health problems.

Dealing with feelings of sadness

If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, you may have depression. This is quite common among people who have had leukaemia.

Talk to your GP, because counselling or medication – even for a short time – may help. Some people can get a Medicare rebate for sessions with a psychologist. Cancer Council may also run a counselling program in your area.

For information about coping with depression and anxiety, call Beyond Blue on 1300 22 4636. For 24-hour crisis support, call Lifeline on 13 11 14.

What if the leukaemia returns?

For some people, leukaemia does come back after treatment, which is known as a relapse or recurrence. It may be found in the bone marrow again or, for those with acute lymphoblastic leukaemia (ALL), in the fluid around the brain and the spinal cord. Leukaemia cells may also be found in the testicles. Having regular check-ups means tests may find a relapse before there are symptoms. Finding a relapse early offers the best chance for successful treatment.

If you have a relapse, further treatment may be able to control the leukaemia and lead to a second remission. You may be offered different chemotherapy drugs, targeted therapy drugs, or a stem cell transplant. It may also be possible to join a clinical trial.