Follow-up after treatment for childhood leukemia
Follow-up after treatment is an important part of cancer care. Follow-up for childhood leukemia is often shared among doctors and other healthcare professionals, including hearing specialists (called audiologists), speech-language pathologists, dentists, eye doctors, nurses and psychologists. Your child’s healthcare team will work with you to decide on follow-up care to meet your child’s needs.
Long-term follow-up is important because there is a chance that cancer can come back, or recur. Late side effects from treatment can also develop. People who had cancer as a child are usually followed in aftercare programs for life.
The Children’s Oncology Group (COG) provides long-term follow-up guidelines for childhood cancer survivors. Some centres across Canada have transition clinics set up to follow the survivors of childhood cancer. Transition clinics help to prepare the survivor who is reaching early adulthood to successfully manage in the world of adult healthcare. Find out more about the Children’s Oncology Group long-term follow-up guidelines.
Follow-up after treatment for childhood leukemia includes watching for signs of:
- liver problems
- heart problems
- bone problems
- fertility problems
- hormone changes
- learning problems
- nutritional problems
Report any problems
Don’t wait until the next scheduled appointment to report any new symptoms or symptoms that don’t go away. Tell the healthcare team if your child has:
- easy bruising or bleeding, including frequent or severe nose bleeds, widespread bruising, bleeding gums or red spots on the skin (called petechiae)
- bone or joint pain (may make the child limp)
- swollen abdomen (caused by enlarged liver or spleen)
- unexplained weight loss
- frequent infections
- night sweats
- enlarged lymph nodes
- flu-like symptoms, such as fever, cough or runny nose
- loss of appetite
- stomach pain
Schedule for follow-up visits
The chance of leukemia recurring is greatest within the first few years after treatment has ended, so close follow-up is needed during this time. ALL most commonly recurs in the first 2 years after treatment. AML most commonly recurs 1–4 years after treatment.
Follow-up after childhood leukemia treatment varies. Follow-up visits are usually scheduled:
- every month for the first 6–12 months
- every 3–6 months for the next 4 years
- yearly after that
During follow-up visits
During a follow-up visit, the doctor usually asks questions about the side effects of treatment and how the child is coping. The doctor may do a complete physical examination, including:
- feeling the abdomen to check for enlarged liver or spleen
- checking the lymph nodes for swelling
- testicular exam in boys
Follow-up generally involves a number of tests to check the effects of the cancer, the child’s response to treatment and the child’s progress. A child who is part of a clinical trial will be followed according to the guidelines in the protocol. Tests are often part of follow-up care. Your child may have:
- complete blood count (CBC) to check for abnormal blood cell counts
- blood chemistry tests to show how well certain organs are working and find problems caused by spread of the leukemia cells, or blasts
- bone marrow aspiration and biopsy
- imaging tests, such as chest x-ray, CT scan, MRI or ultrasound, to check the spleen, liver or lymph nodes
If a recurrence is found during follow-up, the oncology team will assess the child to determine the best treatment options.
Find out more about these tests and procedures.
Questions to ask about follow-up
To make the decisions that are right for your child, ask the healthcare team questions about follow-up.
Establishing a national caregivers strategy
The Canadian Cancer Society is actively lobbying the federal government to establish a national caregivers strategy to ensure there is more financial support for this important group of people.