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Brain Stem Glioma - ASCO 2015 - 2

Brain Stem Glioma - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2015

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with brain stem glioma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was previously tested in clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Children who participate in clinical trials are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your child’s doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. For some children, a clinical trial is the best treatment option available. Because standard treatments are not perfect, people are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other people volunteer for clinical trials because they know that these studies are the only way to make progress in treating brain stem glioma. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with brain stem glioma.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials in this way is rare overall and not done at all in childhood cancer research. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options, so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

People who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that parents talk with the doctor and researchers about who will be providing their child’s treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends.

Finding a clinical trial

Research through clinical trials is ongoing for all types of tumors. For specific topics being studied for brain stem glioma, learn more in the Latest Researchsection.

Cancer.Net offers a lot of information about clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of tumor.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research and it explains areas of scientific research currently going on for this type of cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Brain Stem Glioma - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2015

ON THIS PAGE: You will read about the scientific research being done now to learn more about brain stem glioma and how to treat it. To see other pages, use the menu on the side of your screen.

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 also being used to better understand the benefits and risks of using a biopsy to diagnose children with diffuse brain stem glioma.
  • 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 effectiveness of radiation therapy or to slow or stop tumor growth are also being studied.
  • Molecular features. Other research is focused on evaluating the abnormal molecular features of brain stem glioma cells to better diagnosis and categorize these tumors. These features are found by examining the tumor after a biopsy and may eventually help doctors find treatments that target the tumor based on the specific molecular features.
  • 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 improve, target, or restore immune system function. For brain stem glioma, doctors are researching vaccines that may treat the tumor. Learn more about the basics of immunotherapy and cancer vaccines.
  • New ways to give chemotherapy. The blood-brain barrier, which protects the brain and spinal cord from damaging chemicals, also keeps out many types of chemotherapy. New methods of giving chemotherapy called convection enhanced delivery are also being studied. This method uses a narrow tube called a catheter that is placed into the brain so chemotherapy can be directed at the tumor.
  • Palliative 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. 

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding brain stem glioma, explore these related items that take you outside of this guide:

  • To find clinical trials specific to your child’s diagnosis, talk with your child’s doctor or search online clinical trial databases now.
  • Visit ASCO’s CancerProgress.Net website to learn more about the historical pace of research for childhood cancers. Please note this link takes you to a separate ASCO website.
  • Visit the website of the Conquer Cancer Foundation to find out how to help support research for every cancer type. Please note this link takes you to a separate ASCO website. 

The next section in this guide is Coping with Side Effects and it offers some guidance in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Brain Stem Glioma - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2015

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

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 care, and it is an important part of the overall treatment plan, regardless of the stage or grade of disease.

There are possible side effects for every treatment, but patients don’t experience the same side effects when given the same treatments for many reasons. That can make it hard to predict exactly how your child will feel during treatment. Common side effects from each treatment option for brain stem glioma are described in detail within the Treatment Options section. Learn more about the most common side effects of a tumor and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the disease’s grade, the length and dosage of treatment(s), and your child’s overall health. Also, side effects of newer treatments or treatments in clinical trials may be different and not as well studied as older treatments.

Talking with your child’s health care team about side effects

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. Learn more about caregiving.

In addition to physical side effects, there may be 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, including concerns about managing the cost of medical care

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. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.

The next section in this guide is Follow-up Care and it explains the importance of check-ups after treatment is finished. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Brain Stem Glioma - Childhood - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2015

ON THIS PAGE: You will read about your child’s medical care after treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

Care for children diagnosed with brain stem glioma doesn’t end when active treatment has finished. Your child’s health care team will continue to check to make sure the tumor has not returned, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for brain stem glioma should have life-long, follow-up care.

This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. A tumor recurs because small areas of tumor cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your doctor will also ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of tumor originally diagnosed and the types of treatment given.

Managing long-term and late side effects of childhood cancer

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Late effects can occur almost anywhere in the body and include physical problems, such as heart and lung problems and second cancers, and emotional and cognitive (memory, thinking, and attention) problems, such as anxiety, depression, and learning difficulties.

Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. The possible late effects from specific treatments are discussed below:

  • Radiation therapy to the brain and spine can cause cognitive (thought-process) and endocrine (hormonal) symptoms over time, although the severity can vary depending on the dose given and your child’s age.
  • The risks and possible side effects of surgery vary widely, depending on the location and features of the tumor.
  • 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 doctors that are involved in your child's care before, during, and after treatment. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website:

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of the child’s medical information. The doctor will help you create this. 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. ASCO offers forms to help create a treatment summary to keep track of the treatment your child received and develop a survivorship care plan once treatment is completed.

Some children continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of tumor, side effects, health insurance rules, and your family’s personal preferences. Talk with your health care team about your child’s ongoing medical care and any concerns you have about his or her future health.

If a doctor who was not directly involved in your child’s care will lead the follow-up care, be sure to share the treatment summary and survivorship care plan forms with him or her, as well as all future health care providers. Details about the specific treatment given are very valuable to the health care professionals who will care for your child throughout his or her lifetime.

The next section in this guide is Survivorship and it describes how to cope with challenges in everyday life after a diagnosis of brain stem glioma. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Brain Stem Glioma - Childhood - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2015

ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s diagnosis. To see other pages, use the menu on the side of your screen.

What is survivorship?

The word survivorship means different things to different people, but it often describes the process of living with, through, and beyond cancer. In some ways, survivorship is one of the most complex aspects of the cancer experience because it is different for every patient and his or her family.

After active treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a diagnosis of brain stem glioma. Other families stay very anxious about their child’s health and become uncertain of how to cope with everyday life.

One source of stress may occur when frequent visits to the health care team end following treatment. Often, relationships built with the health care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, educational issues, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • Understanding the challenge your family is facing,
  • Thinking through solutions,
  • Asking for and allowing the support of others, and
  • Feeling comfortable with the course of action your family chooses.

It may be helpful to join an in-person support group or online community of childhood cancer survivors. Support groups also exist for parents of children diagnosed with cancer. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

Changing role of caregivers

Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with brain stem glioma, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more aboutadjusting to life after caregiving in this article.

Healthy living after treatment

Survivorship often serves as a strong motivator to make positive lifestyle changes, often for the family as a whole. 

Children who have had brain stem glioma can 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 well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.

In addition, it is important that your child has recommended medical check-ups and tests (see Follow-up Care) to take care of his or her health. Rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your child’s needs.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net offers a lot of information and resources to help survivors cope, including specific sections for children, teens, and young adults. There is also a main section on survivorship for people of all ages.
  • ASCO Answers Cancer Survivorship Guide: This 44-page booklet (available as a PDF) can help with the transition into life after treatment. It includes blank treatment summary and survivorship care plan forms.
  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about childhood cancer survivorship.

The next section offers Questions to Ask the Doctor to help start conversations with your child’s health care team. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Brain Stem Glioma - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2015

ON THIS PAGE: You will find some questions to ask your child’s doctor or other members of the health care team, to help you better understand your child’s diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your child’s next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your child’s care.

Questions to ask after getting a diagnosis

  • What type of tumor has been diagnosed?
  • Where exactly is the tumor located?
  • Is the tumor diffuse or focal? What does this mean?
  • Can you explain my child’s pathology report (laboratory test results) to me?
  • Are other tests needed to confirm this diagnosis?
  • What is your familiarity with my child’s tumor type and its treatment?

Questions to ask about choosing a treatment and managing side effects

  • What are the treatment options?
  • What clinical trials are open to my child at this center? How do I find out more about them?
  • What new research is being done at other treatment centers? Where are they located, and are these clinical trials open to my child?
  • What treatment plan do you recommend? Why?
  • What is the goal of each treatment? Is it to eliminate the tumor, help my child feel better, or both?
  • What are the chances for success with the planned treatments?
  • Who will be part of my child’s health care team, and what does each member do?
  • Who will be coordinating my child’s overall treatment?
  • What are the possible side effects of this treatment, both in the short term and long term?
  • How will this treatment affect my child’s daily life? Will he or she be able to go to school and perform his or her usual activities?
  • Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should I talk with a fertility specialist before treatment begins?
  • If I’m worried about managing the costs related to my child’s medical care, who can help me with these concerns?
  • What support services are available to my child? To my family?
  • Whom should I call for questions or problems?

Questions to ask about having radiation therapy or chemotherapy

  • What type of treatment is recommended?
  • What is the goal of this treatment?
  • How long will it take to give this treatment?
  • What side effects can I expect during treatment?
  • What are the possible long-term effects of having this treatment?
  • What can be done to relieve the side effects?

Questions to ask about having surgery

  • What type of surgery will my child have?
  • How long will the operation take?
  • How long will my child be in the hospital?
  • Can you describe what recovery from surgery will be like?
  • What are the possible long-term effects of having this surgery?

Questions to ask about planning follow-up care

  • What is the risk of the tumor returning? Are there signs and symptoms I should watch for?
  • What long-term side effects or late effects are possible based on the treatment my child received?
  • What follow-up tests will my child need, and how often will he or she need them?
  • How do I get a treatment summary and survivorship care plan to keep in my child’s records?
  • Who will be coordinating my child’s follow-up care?
  • What survivorship support services are available to my child? To my family?

The next section in this guide is Additional Resources, and it offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Brain Stem Glioma - Childhood - Patient Information Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2015

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about care and treatment for a child with brain stem glioma. This is the final page of Cancer.Net’s Guide to Childhood Brain Stem Glioma. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of being diagnosed with a CNS tumor, both for the patient and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

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Junho 2015