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For Patients & Families:
Childhood Brain Tumors
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Scott Pomeroy, MD, PhD
Tumors are masses of abnormal cells that grow out of control. When these tumors are located in the brain, they can be extremely complicated to treat because of the delicate surrounding tissue. Even benign (non-cancerous) tumors can be life threatening because of the pressure they can place on vital brain structures.

Brain tumors in children are relatively rare - occurring in only five of every 100,000 children. As with other tumors in both children and adults, surgery is the primary treatment, usually followed by radiation treatment and/or chemotherapy.

Unfortunately, because the brain of a child is still developing, these treatments can result in more substantial and permanent side effects for children than for adults. Because of the possible long-term problems and the risk of a tumor returning, assessments and care usually continue for years after the tumor is removed.

Diagnosing Brain Cancer
As with any disease, the chances of treatment being successful are much higher if a brain tumor is caught early. For early detection, parents need to know the symptoms to watch for. Headaches are one of the biggest indicators of a brain tumor, yet most headaches are not a reason for alarm. You should worry about your child's headaches if they:
  • Tend to occur in an established pattern specifically in the morning or at night
  • Become progressively worse and more frequent
  • Are accompanied by neurological symptoms such as:
  • Double vision
  • Blurred vision
  • Weakness in the arms and legs
  • Uncoordinated muscle movements
Only a tiny fraction of headaches are ever associated with brain tumors, so for the majority of headaches doctors typically will not do imaging tests of the brain. However, when headaches are accompanied by neurological symptoms it's important that a magnetic resonance imaging (MRI) or CT Scan is done. Don't be afraid to ask about obtaining these tests with your pediatrician if you are worried that a brain tumor might be a realistic possibility.
Getting Expert Medical Care
If your child has been diagnosed with a brain tumor, you will want to get the best possible treatment. When choosing medical care, it is important to look for:
  • A brain surgeon specializing in children (pediatric neurosurgeon) who has done many surgeries and uses the latest "targeting technologies." These new technologies help surgeons remove as much of a tumor as possible while minimizing the damage to the surrounding healthy tissue.
  • A hospital or medical center that offers a team of doctors and nurses specializing in a variety of areas such as oncology, radiation therapy, neurology and psychology. Because of the potential long-lasting complications that most children with brain tumors face, it's important to have access to a variety of specialists, says Scott Pomeroy, MD, PhD, director of Neuro-Oncology at Children's Hospital Boston.
Long-Term Effects
While the survival rate for childhood brain cancer is approximately 60 percent and improving each year, there are long-term complications that affect almost all those who are treated. Neurosurgeons do everything they can to minimize the damage that removing the tumor can have on healthy parts of the brain. But often surgery, radiation and chemotherapy do harm surrounding areas, potentially causing changes in your child's ability to think and move. Effects can include:
  • learning disabilities
  • seizures
  • stunted growth
  • hearing loss
  • cataracts or other vision loss
A good medical team should not only treat your child's cancer, but should also work to prevent and treat potential long-term side effects. For the best results, a team of multi-disciplined specialists is important. Your treatment team may include:
  • Oncologists - doctors who specialize in the diagnosis and treatment of cancer
  • Radiologists: doctors with special training in diagnosing diseases by reading x-rays, CT scans and magnetic resonance imaging (MRI)
  • Neurosurgeons - doctors who specialize in surgery on the brain and other parts of the nervous system
  • Radiation Therapists - specialists who use high-energy rays to damage cancer cells and stop them from growing and dividing
  • Neurologists - doctors who specialize in diagnosing and treating disorders of the nervous system
  • Endocrinologists - doctors who specialize in diagnosing and managing hormone conditions
  • Ophthalmologists - doctors who specialize in the structure and function of the eye, and in the diagnosis and treatment of eye diseases
  • Developmental Specialists - nurses, social workers or early childhood educators who diagnose and treat developmental disorders such as learning and physical disabilities and delays
  • Psychologists - doctors who specialize in diagnosing and treating emotional and behavioral problems
  • Child Life Specialists - specialists who focus on the emotional and developmental needs of children and their families, assisting them in reducing the stress of facing long-term medical care.
No one is to blame
No matter the outcome, parents can be assured there is nothing they could have done differently to prevent their child from having a brain tumor. According to Dr. Pomeroy, there has never been any conclusive research linking environmental factors such as cell phones, telephone wires, alcohol or artificial sweeteners to incidences of brain cancer.
Helping Your Child Cope
  • Talk with your child - Let your child know it's ok to be sad, frustrated, angry, or scared, and that you will be there to help him through it. Make sure he knows that people do not always die from cancer. Talk with your child about what cancer is, what treatment will be like and why it's important. Often, the unknown is what children fear the most.
  • Give your child some control - Let your child make some of his own decisions as long as it doesn't negatively affect his health or medical treatment. It can be important for him to feel like he has control over some aspects of his life.
  • Maintain a sense of normalcy - Resist the temptation to spoil your child. It may give him the impression that he is sicker than he is being told. Keeping a child accountable, within reason, to his regular responsibilities gives him the message that he is still an important and productive person and that life as he has known it is not over.
  • Encourage continued learning, friends and activities - Finding ways to help your child continue in school can be helpful to his self-esteem, sense of normalcy and academic development. Depending on a child's treatment and progression, this can be accomplished through a combination of regular school attendance, in-hospital tutors, home schooling and classroom participation via email. While he's out of school, encourage him to stay in touch with friends and classmates. Children with cancer often miss out on activities that they otherwise would participate in. Take breaks from talking and thinking about cancer to let your child have fun. It's important for him to feel like cancer is just a small part of his life and does not define who he is.
  • Take advantage of support resources - It can be tremendously helpful for your child to connect with other children who are going through the same experiences. Support groups can be found at the hospital where your child is receiving treatment, on the Internet or in your local area.
Helping Parents Cope
Shock, denial, fear, anxiety, guilt, sadness, grief, and anger are all normal reactions for parents to have when their child is diagnosed with a brain tumor. Understand that you will go through a range of emotions.
  • Take advantage of support resources for parents - Support groups are available for parents and can be found online as well as at the medical facility where your child is getting treatment. Hospitals often offer support and counseling services to help families deal with a long-term or complicated illness.
  • Take care of other relationships - While you may feel like all your energy is focused on your child with medical needs, be sure to take care of your other family relationships, including your marriage. Communicate with each other but remember that people deal with emotions differently. Allow each other some leeway in how you communicate and handle the situation. Pay attention to your other children as well. Make sure siblings know what's going on and feel a part of the process.
  • Maintain a sense of normalcy - Although your regular routine may change to be centered around the hospital, try to keep your life as normal as possible. Continue doing activities that were important to you. Maintaining some sense of normalcy will help your family be in the best mindset to help your child. Remember that it's okay to have fun and relieve your stress while your child is undergoing treatment.
  • Keep a journal - Keeping a journal of your child's health and medical care can be helpful for both you and your child's medical team, especially if you ever need to change specialists. You can also record your emotions and look back to reflect how you have managed each phase of the situation.
  • Research and learn - Learn everything you can about your child's condition and the treatments available. Read inspirational stories about brain tumor survivors and about parents who have been through similar situations.
  • Share with other parents - Talking to others to share your feelings, experiences, hopes and needs is one of the best ways to cope. As you go through the experience of your child's illness and treatment, you will gain knowledge and insight, which could be invaluable to another parent. They in turn may offer you comfort, support and hope.
A hopeful future
Treatment for brain tumors in children has progressed tremendously in the last decade. New tools are being used to help doctors diagnose tumors sooner and with more accuracy. Radiation therapy and chemotherapy are increasingly targeting tumors more accurately and effectively while keeping clear of healthy brain cells and tissue. A successful new surgical technique is the intraoperative MRI, which gives surgeons a three-dimensional picture of the tumor so they can remove the cancer while leaving other parts of the brain relatively untouched. Working toward better outcomes for children with brain tumors is a collaborative effort among medical professionals throughout the country. "Things are getting better and successes are increasing," says Dr. Pomeroy. "We're working to improve not only survival but functionality as well."
Source: Scott Pomeroy, MD, PhD. Dr. Pomeroy is Chairman of the Department of Neurology at Children's Hospital Boston, and Associate Professor of Neurology at Harvard Medical School.

Please keep in mind that the text provided is for informational purposes only and is not a substitute for professional medical advice, examination, diagnosis or treatment. Always seek the advice of your physician or other qualified health professional before starting any new treatment or making any changes to existing treatment.

Children's Hospital Boston©, 2005. This page may be reproduced for educational purposes. Reprint permission is required for all other uses.

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