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Life as a Survivor of a Childhood Brain Tumor or Spinal Cord Tumor

After Treatment 

IMG_2186The central nervous system—including the brain and the spinal cord—grows and develops very quickly during childhood. This rapid rate of growth and development can make treating a brain and/or spinal cord tumor in children especially complicated for several reasons. First, the growth of the tumor can more easily damage the rapidly-changing tissues of the central nervous system (CNS). Second, the tissues of the CNS are extremely sensitive to the potentially damaging impact of chemotherapy, radiation, and other tools required to eliminate the tumor. These two issues are especially concerning when discussing survivorship issues for childhood brain and spinal cord tumors, and may have repercussions well into adulthood.

Generally speaking, most parents and guardians of children with a brain or spinal cord tumor have two main questions as they begin to look at their child’s life as a childhood cancer survivor:

  • Will the tumor return?
  • How do we cope with the effects of the tumor and its treatment?

Will the Brain Tumor Return: Developing A Survivorship Care Plan

Once your child’s treatment is complete and your child has been declared “cancer free”, most families are eager to return to “normal life”. Yet this sense of well-being and even excitement can be undermined by concerns about whether the tumor will return. The best way to alleviate these concerns—and enable yourself to enjoy a cancer-free life with your family—is to develop A Survivorship Care Plan. This Care Plan will carefully detail all the necessary follow-up scans and tests needed to monitor your child for any possible return of the tumor, as well as detect and manage potential late effects.

Although many families note an increased level of anxiety around follow-up visits, it is important to stick to the schedule of follow-up visits and exams as dictated by your child’s oncology team. These visits will likely include imaging tests such as CT scans or MRIs, physical exams, blood work and other tests to monitor your child’s short- and long-term recovery and watch closely for signs that the tumor may be re-growing. Your child’s specific schedule of follow-up testing will depend heavily on the type and location of the tumor and the type and duration of treatment; for instance, children who underwent radiation may require routine scans and follow-up visits for many years after treatment because of the elevated risk for secondary cancers.

Coping with the Effects of the Tumor and Its Treatment

Both the tumor and the treatment required to fight the tumor can have significant physical, emotional, and mental side effects, depending on the type of tumor and where, and how big, it grew before treatment. Some of these side effects may be very obvious, some may be much more subtle; some side effects may appear immediately, while others may not occur until years after treatment. Once your child has been declared cancer-free, your medical team will work together to determine the extent of damage to the brain and central nervous system and to analyze the potential effects of that damage.

Coping with the potential side effects from a brain or spinal cord tumor will likely fall outside the qualifications of your child’s oncologist and require the services of one or more specialists who can help mitigate and hopefully overcome any damage caused by the tumor and its treatment. Examples of specialists include:

  • Neurologist: A specialist in the central nervous system who can help identify and manage side effects relating to physical coordination, muscle strength, and seizures.
  • Ophthalmologist: A specialist in eye problems for handling any issues relating to vision.
  • Audiologist: A specialist who can address any issues relating to hearing.
  • A speech therapist: A speech therapist can address any issues your child may be experiencing with talking and communicating.
  • Physical and/or occupational therapists: Experts who can provide physical therapy to overcome muscle weakness, paralysis, or difficulty walking, balancing, and other movement-related concerns.

  • Psychiatrist or psychologist: A mental-health professional can be extremely helpful in diagnosing and documenting developmental concerns, especially relating to general intelligence, speech and hearing, memory, learning skills, and special educational needs.
  • Endocrinologist: An expert in hormone disorders who can help side effects relating to growth, hormone imbalances, and future reproductive issues. This type of specialist will be especially important for children with a tumor in or near the brain stem (at the base of the brain) or near the pituitary gland.

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

More about Childhood Brain Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.


For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at , call 855.858.2226 or visit:

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