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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. Studying 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 with a CNS tumor 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 a tumor 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, physical and occupational therapists, 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 astrocytoma 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 typically used to treat astrocytoma in children: surgery, radiation therapy, and chemotherapy. Take time to learn about the treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your child’s doctor and what you can expect during the treatment.
Surgery is the removal of the tumor and surrounding tissue during an operation. It is the most common treatment for astrocytoma. During surgery, a neurosurgeon removes as much of the tumor as possible. Even if a tumor cannot be reached by surgery because of its location (called inoperable), a surgical biopsy can usually still be done to find out the type and grade of the tumor .
If a low-grade tumor cannot be completely removed, the child is often monitored by his or her doctor to watch for signs of tumor growth before considering other types of treatment. If a tumor causes symptoms and cannot be completely removed with surgery, radiation therapy or chemotherapy is often used. A child with a high-grade tumor often needs additional treatment regardless of whether the entire tumor was removed during surgery.
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 treatment 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 short-term side effects go away soon after treatment in finished. However, because radiation therapy can sometimes cause problems with the long-term growth and development of a 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 or given orally 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 for astrocytoma is often a combination of two or three drugs.
Chemotherapy may be used to delay or avoid using radiation therapy in young children with low-grade tumors, such as JPA, due to possible side effects. For a high-grade tumor, chemotherapy may be more effective when used with surgery and 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, hair loss, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished.
The medications used to treat CNS tumors 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.
Getting care for symptoms and side effects
Astrocytoma and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the disease, an important part of care is relieving a child’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the child with his or her physical, emotional, and social needs.
Palliative care can help a child at any stage of illness. Children 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 that they are more satisfied with treatment.
Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, and other therapies. Your child may also receive palliative treatments similar to those meant to eliminate the tumor, such as chemotherapy, surgery, and radiation therapy. Talk with your child’s doctor about the goals of each treatment in the treatment plan.
Before treatment begins, talk with your child’s health care team about the possible side effects of your child’s specific treatment plan and supportive care options. And during and after treatment, be sure to tell the doctor or another health care team member if your child is experiencing a problem so it is addressed as quickly as possible.
A remission is when tumor cells 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 the doctor about the possibility of the disease 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 may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence). When astrocytoma recurs, it usually recurs near where the tumor originally started.
When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence, including whether the tumor’s stage and grade has changed. 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 surgery, chemotherapy, and radiation therapy), but they 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 astrocytoma depends on three factors:
Grade of the tumor
Where the tumor recurred
The type of treatment the child received for the original tumor
If the tumor is a low-grade recurrent astrocytoma, the doctor may perform surgery to remove as much of the tumor as possible. Children who have not previously had radiation therapy or chemotherapy may receive one or both of these treatments for the recurrent tumor.
If the tumor is a high-grade recurrent astrocytoma, the doctor may suggest other types of chemotherapy or radiation therapy. Rarely, chemotherapy along with stem cell/bone marrow transplantation may be recommended.
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. Hospice care is a type of palliative care for people who are expected to live less than six months. It is designed to provide the best possible quality of life for people who are near the end of life. 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 astrocytoma, 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 astrocytoma are described in detail within the Treatment section. Side effects depend on a variety of factors, including the type of tumor, its 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 astrocytoma.
In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. 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 astrocytoma 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 a CNS tumor, including astrocytoma, should have life-long, follow-up care.
A child’s specific follow-up care plan depends on many factors, including the grade of tumor and its location, the child’s age, and the type of treatment given.
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 secondary cancers. 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 secondary cancers are also based on the specific drugs used and their doses. Craniospinal (head and spine) radiation therapy may cause cognitive (thought-process) and endocrine (hormonal) symptoms over time, although how serious these side effects are depends on the dose and the age of your child. Your child’s doctor can recommend the necessary screening tests. Follow-up care should also address your 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. ASCO offers treatment summary forms to help keep track of the treatment your child received and develop a survivorship care plan once treatment is completed.
Children who have had a CNS 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 astrocytoma, 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 methods of imaging and surgery. Imaging techniques are being developed and refined that help surgeons better pinpoint the tumor’s location to reduce or prevent damage to the healthy parts of the CNS during treatment.
Functional MRI (fMRI) is an imaging technique that identifies the parts of the brain that control speech, hearing, vision, touch, and movement. The specific locations of these functions are slightly different in every person, so fMRI allows surgeons to plan surgery around these areas.
Image-guided stereotaxis allows surgeons to visualize and operate on the brain using three-dimensional 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 often can be removed with this technique.
Improved ways to give radiation therapy. Conformal radiation therapy is a way to deliver high doses of radiation directly to a tumor and not healthy tissue. This technique produces detailed three-dimensional maps of the brain and tumor, so doctors know exactly where to direct the radiation treatment.
Targeted therapy. Recent research has found specific genes, proteins, and other factors unique to astrocytoma. Treatments aimed at these factors, called targeted therapy, are now being studied. Targeted therapy is a treatment that targets the tumor’s specific genes, proteins, or the tissue environment that contributes to growth and survival. This type of treatment blocks the growth and spread of tumor cells while limiting damage to normal cells. Specifically for JPA, this includes drugs that target mutations (changes) in a gene called BRAF that is found in many CNS tumors.
Immunotherapy. Immunotherapy (also called biologic therapy) is designed to boost the body’s natural defenses to fight the tumor. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. Researchers are studying how well these drugs work and how safe they are for children with high-grade and low-grade astrocytoma.
Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current astrocytoma treatments in order to improve patients’ comfort and quality of life.