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In general, tumors in children are uncommon, so it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That's why more than 60% of children are treated as part of a clinical trial. Clinical trials are research studies that compare standard treatments (the best proven treatments available) with newer treatments that may be more effective. Investigating new treatments involves careful monitoring using scientific methods, and all participants are followed closely to track their health and progress.
To take advantage of these newer treatments, all children should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children and have access to the latest research. A doctor who specializes in treating children with cancer 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 cancer centers often have extra support services for children and their families, such as child life specialists, nutritionists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.
Descriptions of the most common treatment options for a brain stem glioma are listed below. Treatment options and recommendations depend on several factors, including the type and grade of the tumor, possible side effects, the family's preferences, and the child's overall health. Three types of treatments are used to treat brain stem glioma in children: radiation therapy, chemotherapy, and surgery. Sometimes, these treatments are used together. The treatment of brain stem glioma for children with the genetic condition neurofibromatosis type 1 (NF1) may differ. A tumor in a child with NF1 may be low-grade even though it looks diffuse, and therefore, active surveillance (also called watchful waiting) may be recommended to monitor the tumor. Treatment would begin if the tumor started to grow and spread.
Radiation therapy is the most common treatment for children with brain stem glioma. 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. When radiation therapy is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.
Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Because radiation therapy can sometimes cause problems with the normal growth and development of the child's brain, the doctor may choose to treat the tumor in another way. To avoid or reduce the need for radiation therapy in young children, the doctor may first use chemotherapy to shrink the tumor.
Chemotherapy is the use of drugs to kill tumor cells, usually by stopping the tumor cells' ability to grow and divide. Systemic chemotherapy is delivered through the bloodstream to reach tumor cells throughout the body. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating a tumor with medication, or a pediatric oncologist. A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.
Chemotherapy alone is not an effective treatment for brain stem glioma; however, sometimes, a doctor may use chemotherapy at the same time as or after radiation therapy. The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished.
The medications used to treat brain stem glioma are continually being evaluated. Talking with your child's doctor is often the best way to learn about the medications prescribed for your child, their purpose, and their potential side effects or interactions with other medications.
Surgery is the removal of the tumor and surrounding tissue during an operation. Surgery is used to treat brain stem glioma only when the tumor looks focal on an MRI scan , which means that it may be possible to remove the tumor without damaging the brain, such as when a tumor grows out from the brain stem instead of into the brain stem. For most children with diffuse types of brain stem glioma, surgery is not recommended or possible because of the location of the tumor and the risk involved.
A tumor and its treatment often causes 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 families report they are more satisfied with treatment.
Before treatment begins, talk with your child's health care team about the possible side effects of your specific treatment plan and supportive care options. And during and after treatment, be sure to tell your child's doctor or another health care team member if your child is experiencing a problem, so it is addressed as quickly as possible.
Recurrent brain stem glioma
A remission is when the tumor cannot be detected in the body and there are no symptoms. This may also be called “no evidence of disease” or NED.
A remission can be temporary or permanent. This uncertainty leads to many people feeling worried or anxious that the tumor will come back. While many remissions are permanent, it's 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 disease does return.
If the tumor does return after the original treatment, it is called a recurrent tumor. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).
When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, you and your child's doctor will talk about the treatment options. Often the treatment plan will include the therapies described above (such as radiation therapy, chemotherapy, and surgery) but may be used in a different combination or given at a different pace. Your child's doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent tumor.
Treatment for recurrent brain stem glioma depends on two factors:
The type of tumor (diffuse or focal)
The type of treatment the child received for the original tumor
Depending on the situation, the doctor may recommend either surgery or chemotherapy.
A recurrent tumor may bring up emotions such as disbelief or fear. You and your family are encouraged to talk with the health care team about these feelings and ask about support services to help you cope.
If treatment fails
Although treatment is successful for the majority of children with a tumor, 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 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.Some families find comfort in contributing to research efforts to advance knowledge about brainstem glioma.
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 brain stem glioma are described in detail within the Treatment section. Side effects depend on a variety of factors, including the grade, 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 brain stem glioma.
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 brain stem glioma ends, talk with your child's doctor about developing a 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 brain stem glioma should have life-long, follow-up care.
The child's follow-up care plan and the long-term risks of treatment depend on several factors, such as the type of tumor and its location, the age of the child when diagnosed, and the type of treatment. For example, radiation therapy to the brain and spine can cause cognitive (thought-process) and endocrine (hormonal) symptoms over time, although the severity can vary greatly depending on the dose given and the age of the child. Similarly, the risks and possible side effects of surgery vary widely, depending on the location and features of the tumor. Likewise, the risks of chemotherapy and the chance of a secondary tumor strongly depend on the specific drugs used and the dosage. For each of these issues, it is important to discuss the specific aspects of the tumor and the options for treatment with the neurosurgeon and neuro-oncologist (a medical doctor who specializes in CNS tumors) that are involved in the child's care.
Based on the type of treatment your child received, the doctor will determine what examinations and tests are needed to check for long-term side effects and the possibility of a secondary tumor. 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.
Doctors are working to learn more about brain stem glioma, ways to prevent it, how to best treat it, and how to provide the best care to children diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your child's doctor about the diagnostic and treatment options best for your child.
Improved imaging and surgery. Imaging techniques are being developed that help the surgical oncologist pinpoint the tumor's exact location to reduce or prevent damage to the healthy parts of the brain. For example, image-guided stereotaxis allows surgeons to visualize and operate on the brain using three-dimensional computerized outlines of the brain and the tumor. Along with specialized software, these images help guide the surgeon to the tumor. Tumors that were once considered inoperable can now be removed using this technique. In certain instances, these imaging techniques are being used to better understand the benefits and risks of using a biopsy to diagnose children with diffuse brain stem gliomas.
Improved radiation therapy. Conformal radiation therapy is a way to give high doses of radiation directly to a tumor and not healthy tissue. This technique creates detailed, three-dimensional maps of the brain and tumor so doctors know exactly where to deliver the radiation therapy. In addition, drugs designed to enhance the effect of radiation therapy or to slow or stop tumor growth are also being studied.
Molecular features. Other research is focused on using the structure and function of cells at the molecular level to better diagnosis a brain stem glioma and predict how well treatment may work. These studies may help doctors find out how a CNS tumor starts and grows and how to best treat it.
Immunotherapy. Immunotherapy (also called biologic therapy) is designed to boost the body's natural defenses to fight the cancer. It uses materials made either by the body or in a laboratory to bolster, target, or restore immune system function.
New ways to give chemotherapy. The blood-brain barrier, which normally serves to protect the brain and spinal cord from damaging chemicals, also keeps out many types of chemotherapy. New methods of delivering chemotherapy through the blood-brain barrier and directly to the tumor are being studied for brain stem glioma.
Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current brain stem glioma treatments in order to improve patients' comfort and quality of life.
Tissue donation. Some families find that donating tissue feels appropriate as part of the grieving process after their child's death. Similar to organ donation, tissue donations can help researchers learn more about how tumors change and spread to help develop new treatments for children with brain stem glioma. Talk with your doctor for more information about tissue donation.