Survival rates for selected childhood brain and spinal cord tumors

Survival rates are often used by doctors as a standard way of discussing a person’s prognosis (outlook). Some parents may want to know the survival statistics for children in similar situations, while others may not find the numbers helpful, or may even not want to know them. If you do not want to read about the survival statistics for brain and spinal cord tumors given in the next few paragraphs, skip to the next section.

The 5-year survival rate refers to the percentage of children who live at least 5 years after their cancer is diagnosed. Of course, many children live much longer than 5 years (and many are cured).

In order to get 5-year survival rates, doctors have to look at children who were treated at least 5 years ago. Improvements in treatment since then may result in a more favorable outlook for children now being diagnosed with brain tumors.

The numbers below come from the Central Brain Tumor Registry of the United States (CBTRUS) and are based on children aged 19 or younger who were treated between 1995 and 2008. There are some important points to note about these numbers:

• These numbers are for some of the more common types of tumors. Numbers are not readily available for all types of tumors that occur in children, often because they are rare or are hard to classify.
• In some cases, the numbers include a wide range of different types of tumors that may have different outlooks. For example, the numbers for PNETs include medulloblastomas, which tend to have a better outlook than pineoblastomas or PNETs in other parts of the brain.

Survival rates are often based on previous outcomes of large numbers of children who had the disease, but they cannot predict what will happen in any particular child’s case. Knowing the type of a child’s brain tumor is important in estimating their outlook. But many other factors may also affect a child’s outlook, such as the location and extent of the tumor and how well it responds to treatment. Even when taking these other factors into account, survival rates are at best rough estimates. Your child’s doctor is your best source of information on this topic, as he or she is familiar with your child’s individual situation.

How are brain and spinal cord tumors in children treated?

General comments about treatment

Children and teens with brain and spinal cord tumors and their families have special needs that can be met best by cancer centers for children and teens, working closely with the child’s primary care doctor. Treatment in these centers takes advantage of teams of specialists who know the differences between cancers in adults and those in children and teens, as well as the unique needs of younger people with cancer.

For childhood brain and spinal cord tumors, this team is often led by a pediatric neurosurgeon, a doctor who uses surgery to treat brain and nervous system tumors in children. Other doctors on the team may include:

• Pediatric neurologist: a doctor who treats brain and nervous system diseases in children
• Radiation oncologist: a doctor who uses radiation to treat cancer
• Pediatric oncologist: a doctor who uses chemotherapy and other medicines to treat children’s cancers
• Endocrinologist: a doctor who treats diseases in glands that secrete hormones

Many other specialists may be involved in your child’s care as well, including nurse practitioners, nurses, psychologists, social workers, rehabilitation specialists, and other health professionals.

Going through cancer treatment with a child often means meeting lots of specialists and learning a whole new system. You can find out more about it in our separate document, Children Diagnosed With Cancer: Understanding the Health Care System.

Before treatment, the doctors and other members of the team will help you, as a parent, understand the tests that will need to be done. The team’s social worker will also counsel you about the problems you and your child may have during and after surgery, and might be able to help you find housing and financial aid if needed.

Other team members, such as a psychologist and specialists in rehabilitation, may also see your child before treatment begins. For example, if the tumor is slow growing and your child’s condition is stable, he or she may be seen by a psychologist before treatment to assess any damage the tumor may have caused. Most of the work of these specialists takes place after treatment.

The main treatments for children with brain and spinal cord tumors are:

• Surgery
• Radiation therapy
• Chemotherapy
• Targeted therapy
• Other drug treatments

In many cases children will get some combination of these treatments. Treatment is based on the type of tumor and other factors. Doctors plan each child’s treatment individually to give them the best chance of a cure while limiting side effects as much as possible.

The next few sections describe the various types of treatments used for brain tumors in children. This is followed by a description of the most common treatment approaches based on the type of tumor.