Brain tumors are the most common solid tumor in children. At the University of Minnesota we have a multidisciplinary program in place that specializes in the care of children with brain tumors. The Pediatric Brain Tumor Program uses the expertise of pediatric physicians in the areas of neurosurgery, oncology, radiation therapy, neurology, endocrinology, ophthalmology, radiology, and neuropsychology. Other specialties may also be involved if necessary. A master's prepared nurse coordinator coordinates the program. The multidisciplinary program is designed to provide each patient and family with the most advanced and comprehensive care available in a caring and timely manner.

If your child has been diagnosed with a brain tumor you are, of course, very concerned and upset. The issues are complicated and possibly confusing for your family. In what follows, we have answered some basic questions about pediatric brain tumors and their treatment. We also want to acquaint you with the Pediatric Brain Tumor Program and its members.

On this page:

• What is a Brain Tumor?
• How Common Are Brain Tumors?
• Types of Pediatric Brain Cancer
• What Causes a Brain Tumor?
• Diagnosis
• How are Brain Tumors Treated?
• What are Clinical Trials?
• Pediatric Brain Tumor Program
• Care Team Members

What is a brain tumor?

A brain tumor is an abnormal growth of cells in the brain. These cells come from the supporting structure of the brain. There are several types of supporting cells. The type and name of your child's tumor is based on the type of supporting cell that begins to grow abnormally.

What is the difference between the brain and the central nervous system (CNS)?
The brain is one part of the central nervous system. The CNS is made up of the brain and the spinal cord.

What do the terms benign and malignant mean? Why are some tumors called benign versus malignant?
This can be confusing. Health professionals often use different words to describe the same disease. Usually a tumor is referred to as malignant when it spreads beyond the original site to other areas or organs. Tumors that begin in the brain usually do not spread to other organs within the body but can sometimes spread in the central nervous system. Even though brain tumors may not spread to other organs, they can cause problems by growing within the head, putting pressure on the normal brain tissue, or destroying healthy tissue.

The dictionary defines benign as mild or harmless and malignant as serious and potentially threatening possibly causing death. This means that some brain tumors, made up of very slow growing cells that do not spread to other locations and can be treated with surgery alone, may be considered benign while other tumors might be malignant even though they remain in the same place.

Are brain tumors cancer?
Again, many different words can be used to describe a brain tumor. A tumor is a mass (lump or cluster) of cells that multiply abnormally for no known reason. Cancer also refers to cells that grow out of control and can spread throughout the body. Some people may not want to call a brain tumor a cancer because it usually does not spread beyond the brain. However, a brain tumor is made of abnormally growing cells that can cause damage. In that sense it is a cancer.

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How Common are Brain Tumors?

Brain tumors are the most common occurring solid tumor in children. They are almost as common as childhood leukemia. Approximately 1,700 brain tumors are diagnosed each year in children in the United States. Primary brain tumors account for 20 percent of all childhood cancer deaths. Because they occur so often in children, brain tumors are a major focus of the work of pediatric oncologists, neurosurgeons, and radiation oncologists. Even so, these tumors are rare compared with many other diseases. Doctors from all over the United States have shared their experience and developed national treatment plans for many types of brain tumors.

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Types of Pediatric Brain Tumors

There are many different kinds of pediatric brain tumors. Listed below are the common ones. The links go to the National Cancer Institute Web site, which provides detailed information about some of the tumors. To return to this site, bookmark this page or use your browser's "Back" button.

Infratentorial Tumors (occur in the lower part of brain)

• Cerebellar astrocytoma
• Medulloblastoma
• Infratentorial ependymoma
• Brain stem glioma

Supratentorial Tumors (occur in the upper part of brain)

• Cerebral astrocytoma
• Supratentorial ependymoma
• Craniopharyngioma
• Intracranial germ cell tumor
• Supratentorial primitive neuroectodermal and pineal tumors
• Visual pathway and hypothalamic glioma

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What Causes a Brain Tumor?

Health professionals honestly do not know what causes a brain tumor. Research has been done for many years to search for causes of brain tumors and is still being conducted today. Past research efforts have investigated areas such as diet, infections, and electromagnetic fields as possible causes; however, none of these factors have been shown to cause brain tumors. We still do not know the cause, but it is likely due to a combination of factors. We do know that brain tumors are not contagious. In some cases, tumors are one part of genetic diseases such as neurofibromatosis and tuberous sclerosis. Children with these diseases have a higher likelihood of developing a brain tumor than other children.

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Diagnosis

Brain tumors may have a variety of symptoms, but none of them is specific. These include:

• headache
• visual symptoms, like the crossing of the eyes or sudden development of a "lazy eye"
• gradual loss of movement in an arm or leg
• poor balance
• an eating disorder
• hearing loss
• speech difficulty

If your child experiences these symptoms, which could be caused by a brain tumor, his or her doctor may order a computed tomographic (CT) scan and/or a magnetic resonance imaging (MRI) scan.

Often, surgery is required to determine whether a brain tumor exists and what type of tumor it is. A small sample of tumor tissue may be surgically removed and examined under a microscope. The diagnosis may be made during the surgical procedure by making a fast frozen tissue section which takes about 20-30 minutes. Sometimes a biopsy is done by making a small hole in the skull and using a needle to extract a sample of the tumor.

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How are Brain Tumors Treated?

After the brain tumor has been detected, most likely by MRI or CT scans, there are several phases of treatment:

The first phase usually involves surgery. The neurosurgeons will try to remove as much tumor as possible without damaging the healthy brain. Sometimes surgery may be too great of a risk so other therapies are used first.

The second phase is the decision making and treatment planning. The neuropathologist, a doctor who specializes in looking at brain tumor cells, will examine the tumor cells from the operation to determine the type of tumor. Together, the oncologist, radiation therapist, and neurosurgeon decide on the best options and make a plan of care.

The third phase involves the actual treatment. It may be radiation therapy or chemotherapy or a combination of both. Some children may need no other therapy following surgery. The therapy is determined by many factors such as the type of tumor, its location, and your child's age. For more information, see the Treatments for Cancer page.

The fourth phase is follow-up care. The Pediatric Brain Tumor Program has a follow-up clinic headed by a pediatric neurologist. All the physicians involved in the child's care are available for consultation during this clinic time.

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What are Clinical Trials?

Clinical trials are scientific research studies designed to gather information on the treatment of disease so doctors can improve the therapies, reduce the side effects, and determine which therapies work best. Clinical trials use a written plan of treatment called a protocol. Cooperative groups, such as the Children's Oncology Group (COG), are made up of several medical institutions using the same protocol in order to gather information in order to answer these questions as quickly as possible.

The Pediatric Brain Tumor Program located at the University of Minnesota Medical Center, Fairview, is an active participant in the COG, which looks at the best possible treatments for pediatric brain tumors. First and foremost, children are ALWAYS treated with the best therapy possible. Sometimes, however, we do not know which one of similar treatments is the best. Clinical trials help us compare these treatments. Patients are closely watched for any signs of side effects and any signs that one therapy might be better than another.

• View a list of Cancer Center clinical trials for pediatric cancer, including pediatric brain tumors.

You may also contact our program coordinator, Jane Torkelson, R.N., M.S., at 612-273-8422 for more information.

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Pediatric Brain Tumor Program

Children who have been diagnosed with a brain tumor often will see multiple health care providers in many different specialties over the course of their diagnosis, treatment, and follow-up care. The type of tumor and its location will determine what kinds of specialists will become involved in each child's care. Your child may be involved with only one specialty area at a time, or may be seen by multiple specialties at the same time.

Here are some of the different health care professionals that you may meet:

Pediatric Neurosurgeon: A doctor who specializes in surgery of the brain and nervous system in children.

Pediatric Oncologist: A doctor who specializes in the study and treatment of children's cancer through the use of chemotherapy. Radiation Oncologist A doctor who specializes in the treatment of cancer through the use of radiation therapy.

Pediatric Neurologist: A doctor who specializes in the nonsurgical care of children with problems related to the brain or nervous system.

Pediatric Endocrinologist: A doctor who specializes in the treatment of children with problems relating to hormones, growth and development.

Pediatric Ophthalmologist: A doctor who specializes in the care of children with eye and vision disorders.

Pediatric Neuropsychologist: A person with a doctorate degree who works with children who may have difficulties in the areas of learning, memory, attention and behavior.

Care / Program Coordinator: A nurse with a master's degree who coordinates the care of patients in the Pediatric Brain Tumor Program and manages other aspects of that program.

The following list includes some of the pediatric physicians who may become involved in the care of a pediatric brain tumor patient at University of Minnesota Children's Hospital, Fairview.

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Care Team Members

The links below go to physician profiles on the University of Minnesota Physicians Web site. To return to this site, either bookmark this page or use your browser's back button.

Nurse Coordinator:
Jane Torkelson, R.N., M.S.
jtorkelson@umphysicians.umn.edu
612-273-8422
(The nurse coordinator is often the best person to call with questions or for assistance.)

Neurosurgery:
Cornelius Lam, M.D.
612-624-6666

Stephen Haines, M.D.
612-624-6666

Oncology:
Joseph Neglia, M.D.
612-626-2778

Chris Moertel, M.D.
612-626-2778

Tammie Dahlheimer, R.N., C.N.P.
612-626-2778

Radiation Therapy:
Kathryn Dusenbery, M.D.
612-273-6700

Neurology:
Steven Rothman, M.D.

Neuropsychology:
Fiona Anderson, Ph.D.
612-625-7466

Endocrinology:
Bradley Miller, M.D.
612-624-5409

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