Follow-up after treatment for childhood brain and spinal cord tumours

Follow-up care lets the healthcare team keep track of your child's health for a period of time after treatment ends. This care is often shared among the cancer specialists and your child's family doctor. They will help your child recover from treatment side effects and watch for any signs that the cancer has come back (recurred).

Follow-up care may not seem that important, especially if treatment was long or very hard. It may seem stressful because it is a reminder of cancer and treatment. But follow-up care is an important part of cancer care. Talk to your child's healthcare team about follow-up and why it matters. The healthcare team is there to help.

Initial follow-up focuses on checking to see if a childhood brain or spinal tumour has come back and making sure that your child has recovered from treatment.

In the long term, follow-up looks for late effects from treatment. People who have a childhood cancer may be followed in aftercare programs for the rest of their lives. 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 who are reaching early adulthood to successfully manage their own healthcare.

Don't wait until the next scheduled appointment to report any new symptoms and symptoms that don't go away. Tell the healthcare team about:

• headaches
• nausea and vomiting
• unsteadiness
• irritability
• slowed growth
• learning problems
• problems with fine motor skills
• vision or hearing problems
• personality changes
• seizures

The chance that brain and spinal cord tumours will come back (recur) is greatest within the first few years after treatment, so close follow-up is needed during this time.

Follow-up after treatment for a brain or spinal cord tumour varies depending on the type of tumour, its location, the child’s age and the type of treatment given. Follow-up visits for brain and spinal cord tumours are usually scheduled:

• every 3 months during the first year after diagnosis
• every 4 months during the second year
• every 6 months during the third and fourth years
• once each year after the fourth year

During a follow-up visit, the healthcare team will usually ask questions about the side effects of treatment and how your child is coping.

Your child's doctor may do a physical exam, including:

• checking if the thyroid is larger than normal
• checking your child’s reflexes and fine motor skills
• checking your child’s growth, physical development and sexual development
• screening for learning disabilities

Tests are often part of follow-up care and may include:

• hearing and vision testing
• blood tests to check thyroid function, hormone levels and organ function
• an MRI to check if a tumour has come back or to monitor tumour growth

If a tumour has come back or other problems are found, the healthcare team will discuss a plan for treatment and care. Some children may be referred to an endocrinologist if there are any problems with hormones and development.

Find out more about the Children’s Oncology Group long-term follow-up guidelines. The following are questions that you can ask the healthcare team about follow-up after treatment for cancer. Choose the questions that fit your child's situation and add questions of your own. You may find it helpful to take the list to the next appointment and to write down the answers.

• What is the schedule for follow-up visits?
• How often is follow-up scheduled with the cancer specialist?
• Who is responsible for follow-up visits?
• What will happen at a follow-up visit?
• What tests are done on a regular basis? How often are they done?
• Are there any symptoms that should be reported right away? Who do I call?
• Who can help my child cope with long-term side effects of treatment?