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To take advantage of special expertise necessary to treat a brain tumor, children with brain tumors should be treated 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 tumors is called a pediatric oncologist. In many cases, a team of doctors works with a child and the family to provide care; 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, nutritionists, and social workers. Special activities and programs to help your child and family cope may also be available.
Treatment for craniopharyngioma has a high rate of success. Descriptions of the treatment options for craniopharyngioma are listed below. The type of treatment used depends on whether the tumor can be completely removed by 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 age-related permanent learning and memory problems as well as decreased levels of hormones necessary for the body to function normally. Your child's health care team will work with you to explain the benefits and risks of each treatment option.
Surgery is the most common treatment for craniopharyngioma. A neurosurgeon is a doctor who specializes in removing brain tumors using surgery.
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 patients.
Side effects of surgery depend on the tumor's location. Surgery may damage parts of the brain near the tumor, affecting hormone function, vision, arm and leg movement, or consciousness. Sometimes, the tumor may involve the optic chiasm (an area of the brain that controls vision) or involve major blood vessels, making removal of the tumor difficult. Some tumors cannot be removed using surgery because of their location. These tumors are called inoperable, and the doctor will recommend treating the tumor in another way.
The doctor may recommend additional treatment following surgery. Research studies have shown that people treated with partial resection (partial removal, where visible tumor is left behind after surgery) followed by radiation therapy have survival rates similar to those who had a complete removal of the tumor, and often have fewer side effects, such as stroke, severe bleeding, or damage to the hypothalamus (a small structure that regulates the pituitary gland's production of hormones and many other body functions). Talk with your child's doctor before treatment begins about the potential side effects for your child based on the recommended treatment plan.
Radiation therapy is the use of high-energy x-rays or other particles to kill 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 interfere with the normal growth and development of a child's brain, advanced treatment planning techniques should be used to reduce the amount of radiation 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 to help localize the tumor, so doctors know exactly where to deliver the radiation treatment.
Short-term side effects from radiation therapy may include fatigue, mild skin reactions and upset stomach. These side effects go away soon after treatment is finished. More permanent side effects can include hair loss, learning disabilities, low hormone levels, weight gain, and memory problems. Talk with your doctor about possible short- and long-term effects of your child's treatment plan.
Hormone replacement therapy (HRT)
HRT is using medication to replace hormones when the body cannot produce enough. It is often necessary for patients with craniopharyngioma. This is because the tumor or its treatment may damage parts of the brain related to hormone development, particular the pituitary gland. An endocrinologist is doctor who specializes in problems with glands and the endocrine system.
A tumor and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the tumor, an important part of care is relieving a person's symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.
Palliative care can help a person at any stage of illness. People often receive treatment for the tumor and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.
Before treatment begins, talk with the health care team about the possible side effects of your child's specific treatment plan and supportive care options. Be sure to tell your child's doctor or another health care team member if your child is experiencing a problem during and after treatment, so it is addressed as quickly as possible.
When the tumor cannot be seen on an MRI scan, this is called “no evidence of disease” or NED.
The 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. Understanding the risk of recurrence and the treatment options may help you feel more prepared if the tumor does return.
If the tumor does return after the original treatment, it is called a recurrent tumor. It almost always comes back in the same place (called a local recurrence) or nearby (regional recurrence).
When this occurs, more tests may be done to learn as much as possible about the recurrence. After testing is done, your child's doctor will talk about your treatment options. Often the treatment plan will include the therapies described above (such as surgery and/or radiation therapy), but the same type of radiation therapy cannot usually be used more than once. Your child's doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent tumor.
When a tumor recurs, patients and their families often experience emotions such as disbelief or fear. Families are encouraged to talk with their health care team about these feelings and ask about support services to help them cope.
If treatment fails
Although treatment is successful for the vast majority of children with craniopharyngioma, sometimes it is not. If a child's cancer cannot be cured or controlled, this is called advanced or terminal cancer. This diagnosis is stressful, and it may be difficult to discuss. However, it is important to have open and honest conversations with your child's doctor and health care team to express your family's feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.
Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to 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.
The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving.
Coping with Side Effects
Fear of treatment side effects is common after a diagnosis of a tumor, but it may help to know that preventing and controlling side effects is a major focus of your child's health care team. This is called palliative or supportive care, and it is an important part of the overall treatment plan, regardless of the stage of disease.
Common side effects from each treatment option for craniopharyngioma are described in detail within the Treatment section. Side effects depend on a variety of factors, including the length and dosage of treatment(s) and your child's overall health.
Before treatment begins, talk with your child's doctor about possible side effects of each type of treatment your child will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. And, ask about the level of caregiving your child may need during treatment and recovery, as family members and friends often play an important role in the care of a child with craniopharyngioma.
In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies.
During and after treatment, be sure to tell the health care team about the side effects your child experiences, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care.
After treatment for craniopharyngioma ends, talk with your child's doctor about the follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your child's recovery for the coming months and years. All children treated for craniopharyngioma should have life-long follow-up care.
Follow-up care is important to determine whether the tumor has returned or is starting to grow again. It is also important to monitor the person's visual, endocrine (hormone), and metabolic functions. As a result of the tumor and its treatment, hormone replacement therapy is almost always necessary. There are often problems with slow metabolism and weight gain, so a regular exercise program and dietary changes are often recommended.
A child treated for craniopharyngioma should have regular MRI scans to check for any growth or recurrence of the tumor. Because craniopharyngioma is slow-growing and because the likelihood of tumor recurrence is low, MRI scans are often only done once or twice a year. If the patient has been treated with radiation therapy, there is a small possibility that a different type of brain tumor may develop years later.
Based on the type of treatment the child received, the doctor will determine what examinations and tests are needed to check for long-term side effects and the possibility of secondary tumors. Your child's doctor can recommend the necessary screening tests. Follow-up care should also address the child's quality of life, including any developmental or emotional concerns.
The child's family is encouraged to organize and keep a record of the child's medical information. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor's recommendations about the schedule for follow-up care. The doctor's office can help you create this. This information will be valuable to doctors who care for your child during his or her lifetime.
Children who have had a tumor can also enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating a balanced diet, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child's needs.
Most children with craniopharyngioma are not treated in clinical trials if the surgeon can remove all visible tumor or if their age does not limit the use of radiation therapy. However, research on treatments for recurrent (tumors that have grown back) or unresectable (unable to be completely removed by surgery) craniopharyngioma is ongoing. Always talk with your child's doctor about the diagnostic and treatment options best for your child.
Different methods of giving drugs. Interferon given by injection under the skin, and chemotherapy injected directly into the tumor cyst (if there is a large one), are being evaluated to treat some patients with craniopharyngioma. Interferon is a type of biologic therapy. Biologic therapy is designed to target areas on the tumor cells or the tumor blood vessels to try to stop the tumor from growing. Interferon is also part of the body's natural immune system.
Improved methods of giving radiation therapy. For patients with a tumor that cannot be completely removed during surgery, doctors are evaluating new techniques for delivering radiation therapy. The use of three-dimensional radiation techniques allows high doses of radiation therapy to be delivered to the tumor with lower doses to healthy brain tissue. These methods may help reduce damage to healthy tissues.
Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current treatments in order to improve patients' comfort and quality of life.