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

Follow-up after treatment is an important part of cancer care. Follow-up for childhood brain and spinal cord tumours is often shared among the cancer specialists and your child’s family doctor. 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 (recur). Late side effects from treatment can also develop. People who have a childhood cancer are often followed in aftercare programs for life.

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:

  • 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.

Schedule for follow-up visits

The healthcare team will follow all children treated for brain and spinal cord tumours. Follow-up after brain and spinal cord tumour treatment 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 1st year after diagnosis
  • every 4 months during the 2nd year
  • every 6 months during the 3rd and 4th year
  • every year after the 4th year

During follow-up visits

During a follow-up visit, your child’s doctor will usually ask questions about the side effects of treatment, and how your child and family are coping.

The doctor may do a complete physical and neurological examination, including:

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

Tests are often part of follow-up care. Your child may have:

  • 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 the tumour has come back or other problems are found, the healthcare team will assess your child to determine the best treatment options. Some children may be referred to an endocrinologist if there are any problems with hormones and development.

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 your child's healthcare team questions about follow-up.

Expert review and references

  • American Cancer Society. Brain and Spinal Cord Tumors in Children. 2016.
  • Astrocytoma. American Society of Clinical Oncology (ASCO). People Living with Cancer. Alexandria, VA.: American Society of Clinical Oncology (ASCO); 2008.
  • Blaney, S.M., Kun, L.E. et al . Tumors of the central nervous system. Pizzo, P. A. & Poplack, D. G. (Eds.). Principles and Practice of Pediatric Oncology. 5th ed. Philadelphia: Lippincott Williams & Wilkins; 2006: 27: 786-864.
  • Fitzmaurice, N and Beardsmore, S . Common central nervous system tumours. Tomlinson, D. & Kline, N. E. (Eds.). Pediatric Oncology Nursing: Advanced Clinical Handbook. Germany: Springer; 2005: 3: 85-101.
  • MacDonald T . Ependymoma. Omaha: eMedicine, Inc; 2006.
  • MacDonald, T . Astrocytoma. Omaha: eMedicine, Inc; 2006.
  • MacDonald, T . Medulloblastoma. Omaha: eMedicine, Inc; 2006.
  • Patel, R., Dollinger, M. and Greenberg, M . Childhood cancer: Brain tumours. Ko, A. H., Dollinger, M., & Rosenbaum, E. Everyone's Guide to Cancer Therapy: How Cancer is Diagnosed, Treated and Managed Day to Day. 5th ed. Kansas City: Andrews McMeel Publishing; 2008: 549-556.