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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 the cancer specialists and your child’s family doctor or pediatrician. Follow-up may also include 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.
Follow-up is important because there is a chance that cancer can come back (recur) and late side effects from treatment can develop. Initial follow-up focuses on checking to see if the leukemia has come back and making sure that the child has recovered from treatment. In the long term, follow-up looks for late effects of chemotherapy or radiation therapy. People who had cancer when they were children may be 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. These clinics help prepare survivors to successfully manage their own healthcare as they reach early adulthood.
Don’t wait until your child’s next scheduled appointment to report any new symptoms and symptoms that don’t go away. Tell the healthcare team if your child has:
- pale skin
- easy bruising or bleeding
- dark red pin-pointspots on the skin (called petechiae)
- frequent infections
- bone or joint pain that may cause limping
- larger than normal lymph nodes
- pain or feeling of fullness in abdomen
- unexplained weight loss
- loss of appetite
- difficulty breathing
Schedule for follow-up visits
The chance that leukemia will come back is greatest within the first few years after treatment has ended, so close follow-up is needed during this time. Acute lymphoblastic leukemia (ALL) most commonly comes back in the first 2 years after treatment. Acute myelogenous leukemia (AML) most commonly comes back 1 to 4 years after treatment.
Follow-up after childhood leukemia treatment varies. Follow-up visits are usually scheduled:
- every month for the first 6 to 12 months
- every 3 to 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 physical exam, including:
- feeling the abdomen to check for a larger than normal liver or spleen
- checking the lymph nodes for swelling
- checking the testicles in boys
Follow-up generally involves 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 trial’s guidelines. Tests are often part of follow-up care. Your child may have:
- a complete blood count (CBC) to check for abnormal blood cell counts
- blood chemistry tests to show how well certain organs are working and look for problems caused by the spread of the leukemia cells (blasts)
- bone marrow aspiration and biopsy
- imaging tests, such as a chest x-ray, a CT scan, an MRI or an ultrasound, to check the spleen, liver or lymph nodes
If the cancer has come back, you and the healthcare team will discuss a plan for your child’s treatment and care.
Find out more about these tests and procedures.
Questions to ask about follow-up
Find out more about the Children’s Oncology Group long-term follow-up guidelines. To make the decisions that are right for your child, ask the healthcare team questions about follow-up.
Now I know that I will help someone with cancer even after I’m gone. It’s a footprint I want to leave behind me.
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