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After Treatment – Living as a survivor of Childhood Spinal Cord Cancer

Treating Tumors of the Central Nervous System, including Spinal Cord Tumors

Spinal cord tumor cancer childTaken together, the brain and the spinal cord make up what is known as the “central nervous system” (CNS). The CNS is responsible for our body’s most basic functions, like breathing, as well as higher order processing such as thinking and movement. So tumors that develop in a child’s central nervous system, whether the brain or spinal cord, can significantly impact the body’s normal functioning. Exactly what impact stems primary from where the tumor is located, how quickly it grows, and how much damage it causes to the healthy, but extremely delicate, tissues of the spinal cord and brain. Living as a survivor of a spinal cord tumor, whether benign or malignant, usually involves coping with symptoms that stem from (1) the growth of tumor itself and (2) the course of treatment needed to eliminate the tumor.

Therefore, before discussing either short- or long-term “late effects” resulting from a spinal cord tumor, a brief discussion of treatment options for spinal cord tumors makes sense. As with any course of cancer treatment, the goal of treatment is to remove as much of the tumor as possible and to prevent it from re-growing. Treatment will, as much as possible, seek to ameliorate or address symptoms caused by the position and the growth of the tumor in the first place.

  • Surgery: If the spinal cord tumor is located in such a way that surgical removal is possible without causing further damage to healthy tissue, surgery to remove the tumor is usually the first course of treatment. The goal is total removal; however, in some cases, partial removal may be the only option.
  • Radiation therapy: Radiation therapy is most commonly utilized to kill any remaining tumorous cells. Radiation may be the primary treatment if surgery is not possible due to the location of the tumor.
  • Chemotherapy: Drug-based treatment—known as chemotherapy—is usually appropriate for targeting aggressive, fast-growing tumors, for the treatment of some tumors that are known to respond well to chemotherapy, and to treat children under the age of 3 for whom radiation is not usually considered appropriate.

However, for the majority of children diagnosed with a spinal cord tumor, a comprehensive treatment plan will involve some combination of all three approaches. Every treatment plan is unique to each specific child, depending on their unique health circumstances and type of tumor, in order to maximize their chances of long-term survival while simultaneously minimizing the risk of short- and long-term health problems.

Living as a Survivor of Childhood Spinal Cord Cancer

Health problems resulting from either the growth of the tumor itself or from the powerful treatment required to eliminate the tumor are usually called “late effects” and can manifest at any point in a child’s development, even years down the road. Unfortunately, children are especially prone to problematic “late effects” because their CNS is growing and developing so much more actively than an adult’s.

Throughout treatment and afterwards, your child’s oncology team will assess potential damage to the spinal cord with the goal of recommending specific follow-up treatment(s) to mitigate any side effects.  Coping with late effects often involves a variety of different medical specialists, particularly physical and occupational therapists who can help address concerns relating to movement, which is often the most impacted by spinal cord tumors. Psychologists and learning specialists may also be useful for coping with the emotional effects of a cancer diagnosis and treatment.

Two critical—and too often overlooked—elements of living as a spinal cord tumor survivor are:

  1. Faithfully sticking to the schedule of follow-up exams and tests as laid out by your child’s oncology team. While often stressful, these visits are necessary to monitor signs that the tumor is re-developing, or to monitor for so-called secondary cancers which may result from radiation and/or chemotherapy treatment.
  2. Maintaining well-organized records of your child’s cancer treatment. These records will ensure that new doctors throughout your child’s life have a comprehensive understanding of your child’s medical history. This will help successfully address any late effects or other health concerns that may arise, whether or not related to the spinal cord tumor.

More about Childhood Spinal Cord 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 ACCO, or to order resources for you or your child, please visit our website at

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

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