ON THIS PAGE: You will learn about the different types of treatments doctors use for children with craniopharyngioma. Use the menu to see other pages.
To take advantage of the special expertise necessary to treat a brain tumor, children with a brain tumor should receive treatment at a specialized pediatric center. Doctors at these centers have extensive experience in treating children with brain tumors and have access to the latest technology. A doctor who specializes in treating children with a tumor is called a pediatric oncologist. A doctor who specializes in treating children with a brain tumor is called a pediatric neuro-oncologist. If a pediatric treatment center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.
In many cases, a team of doctors provides care to a child and their family. This is called a multidisciplinary team. Pediatric treatment centers often have extra support services for children and their families, such as child life specialists, nurse specialists, dietitians, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.
Treatment for craniopharyngioma is very often successful. Descriptions of the common types of treatments used for craniopharyngioma are listed below. Your child’s care plan may also include treatment for symptoms and side effects, an important part of care for a brain tumor.
The treatment plan used depends on whether the tumor can be completely removed with surgery. If the tumor cannot be completely removed, radiation therapy is usually recommended. However, the side effects of radiation therapy must be considered when deciding on the best treatment for very young children. Radiation therapy can cause permanent learning and memory problems. Radiation therapy can also slow a child’s metabolism and decrease the levels of hormones needed for the body to function well. The doctors will consider several factors before recommending a treatment plan for your child.
There are treatments being studied in clinical trials for patients when the tumor cannot be completely removed surgically but who would like to avoid or delay radiation therapy. A clinical trial is a research study that tests a new approach to treatment. Talk with the doctor about whether this might be an option for your child.
Take time to learn about all of your child’s treatment options and be sure to ask questions about things that are unclear. Talk with your child’s doctor about the goals of each treatment and what your child can expect during treatment. These types of talks are called “shared decision making.” Shared decision making is when you and the doctors work together to choose treatments that fit the goals of your child’s care. Learn more about making treatment decisions.
Surgery is the most common treatment for craniopharyngioma. A neurosurgeon is a doctor who specializes in removing brain tumors, including craniopharyngioma.
The goal of surgery is to confirm the diagnosis and remove as much tumor as possible. Complete removal of craniopharyngioma may also be called a complete resection. This is possible for about 70% to 85% of children diagnosed with craniopharyngioma.
Possible side effects of surgery depend on the tumor’s location. Surgery may damage parts of the brain near the tumor, affecting hormone function, metabolism, vision, arm and leg movement, or consciousness. Sometimes, the tumor may have grown into major blood vessels or the optic chiasm, which is an area of the brain that controls vision. This can make it difficult to remove the tumor. Some tumors cannot be removed using surgery because of their location and can only have a small portion removed during a biopsy (see Diagnosis). In this situation, the tumor is considered inoperable, and the doctor will recommend treating the tumor another way.
The doctor may recommend additional treatment after surgery. Research studies have shown that people with craniopharyngioma that was partially removed who received radiation therapy live as long as those who had the tumor completely removed with surgery. In addition, they often have fewer side effects, such as obesity, hormone changes, stroke, severe bleeding, or damage to the hypothalamus.
Before surgery, talk with your child’s health care team about the possible side effects from the recommended surgery. Learn more about the basics of surgery.
Radiation therapy is the use of high-energy x-rays or other particles to destroy tumor cells. A doctor who specializes in giving radiation therapy to treat a tumor is called a radiation oncologist. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. Because radiation therapy can affect the growth and development of a child’s brain, advanced treatment planning techniques should be used. These techniques can help lessen the amount of radiation given to the areas of the brain not affected by the tumor.
Radiosurgery is a way to deliver a single, high dose of radiation therapy to the tumor while sparing other areas of the brain. This technique requires a head frame so doctors know exactly where to deliver the radiation treatment. This type of radiation therapy is generally used for recurrent craniopharyngioma (see below).
Short-term side effects from radiation therapy may include fatigue, mild skin reactions, and nausea. Most side effects go away soon after treatment is finished. More permanent side effects can include hair loss, learning difficulties, low hormone levels, weight gain, and memory problems. Talk with your child's doctor about the possible short- and long-term effects of your child’s treatment plan.
Learn more about the basics of radiation therapy.
Physical, emotional, and social effects of craniopharyngioma
Craniopharyngioma and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative care or supportive care. It is an important part of your child’s care that is included along with treatments intended to slow, stop, or eliminate the tumor.
Palliative care focuses on improving how your child feels during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of brain tumor, may receive this type of care. And it often works best when it is started right after diagnosis. People who receive palliative care along with treatment for the tumor often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.
Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. Your child may also receive palliative treatments similar to those meant to get rid of the tumor, such as surgery or radiation therapy.
Before treatment begins, talk with your child’s doctor about the goals of each treatment in the treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative care options.
During treatment, your child’s health care team may ask you to answer questions about your child’s symptoms and side effects and to describe each problem. Be sure to tell the health care team if your child is experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.
Increased hunger and obesity
Increased hunger is a common side effect of craniopharyngioma. This can cause obesity. The cause of increased and uncontrolled appetite for food among children with craniopharyngioma is not very well understood. However, it is believed to be related to damage to the nearby hypothalamus by the tumor or from surgery or radiation therapy. For many children with craniopharyngioma, obesity is the most severe long-term side effect of their tumor. Children with craniopharyngioma and their parents should be aware of this risk and pay special attention to eating healthy foods and getting regular exercise. It may be helpful to talk with an oncology registered dietitian and/or other health care team members.
Remission and the chance of recurrence
After treatment, when the tumor can no longer be seen on an MRI scan, this is called having “no evidence of disease” or NED. It may also be called a remission. A remission may be temporary or permanent. This uncertainty of whether the tumor will come back causes many patients and families to feel worried or anxious. While the chance of the tumor coming back may be low, it is important to talk with your child’s doctor about the possibility of the tumor returning. This is also called a recurrence. Understanding your child’s risk of recurrence and the treatment options may help you and your family feel more prepared if the tumor does return. Learn more about coping with the fear of recurrence.
When a recurrence happens, craniopharyngioma most commonly comes back in the same place (called a local recurrence) or nearby (called a regional recurrence). When this occurs, a new cycle of testing may be done to learn as much as possible about the recurrence.
After this testing is done, your child’s doctor will talk about the treatment options. Often the treatment plan will include the treatments described above, such as surgery and/or radiation therapy, but the same type of radiation therapy cannot usually be used more than once. There are also treatments being studied in clinical trials for children with recurrent or worsening craniopharyngioma. Talk with your doctor about whether this might be an option for your child. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.
When a tumor recurs or worsens despite treatment, patients and their families often experience emotions such as disbelief or fear. You are encouraged to talk with the health care team about these feelings and ask about support services to help you cope. Learn more about dealing with a recurrence.
If treatment does not work
Although treatment is successful for the majority of children with craniopharyngioma, sometimes it is not. If a child’s tumor cannot be cured or controlled, this is called an advanced or terminal tumor. This diagnosis is stressful, and advanced craniopharyngioma may be difficult to discuss. However, it is important to have open and honest conversations with your child’s health care team to express your family’s feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help.
Hospice care is designed to provide the best possible quality of life for people who are expected to live less than 6 months. Parents and guardians are encouraged to talk with the health care team about hospice options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Some children may be happier if they can attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced care planning.
The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric treatment centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.
The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for children with a brain tumor. Use the menu to choose a different section to read in this guide.