Pediatric Brain Tumor Foundation
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Questions to Ask

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Doctors often answer only the questions you ask. Our list will help you prepare for your child’s appointments and get the information you need.

Your child’s doctor may recommend surgery, radiation and chemotherapy. Your child may undergo some or all of these treatments, depending on the tumor type and grade. It is important that you understand the effects of each type of treatment.

Before your child is discharged, your hospital should give you a phone number for the on-call doctor. Don’t hesitate to contact the doctor at any time of the day or night if you’re concerned about your child’s health.
The questions below cover eight important topics you might want to discuss with your medical team to make the best decisions for your child. We hope that this information will help you navigate your journey throughout treatment.

Question Topics

Questions About Your Child's Diagnosis

Your child’s doctor will provide some information about the tumor after reviewing the scan. The scan will tell your doctor where the tumor is located and what physical and/or mental impact it may be having on your child. The tumor type and its grade are usually identified during surgery when a pathologist examines brain tissue under a microscope. Tumors are graded from I to IV, with IV being the most aggressive.

You may want to ask:

  • How long will it take to find out my child’s tumor type and grade?
  • What treatment do you recommend?
  • How quickly do we need to make a decision about treatment?
  • What would be the outcome without treatment?
  • What is my child’s prognosis (chance of recovery and survival)?

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Questions About the Hospital

Depending on where they live, some families travel to a teaching hospital with a nationally acclaimed pediatric brain tumor center, for all or part of their treatment. Doctors recognize the importance of your child receiving topnotch care and may indicate that a different medical center is better suited to manage his or her condition.

Do not hesitate to ask for an estimate of the number of pediatric brain tumor patients your hospital sees each year. Find out how this figure stacks up against other facilities. Generally speaking, the hospitals that have the highest volume of childhood brain tumor patients also have the best treatment reputations.

Some children may do just as well at smaller hospitals. You can request a second opinion from a larger hospital by having your hospital send your child’s charts and scans for review.

You may want to ask:

  • Is this the best hospital to treat my child?
  • If we would like a second opinion, whom do you recommend?
  • Will our insurance policy cover treatment at the out-of-state hospital that you recommend?
  • Will our family be allowed to stay with our child in the hospital during treatment?

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Questions About Surgery

Most brain tumors are first treated by a neurosurgeon who will remove as much of the tumor as possible without damaging brain function. In many cases, other treatments may also be necessary after surgery. Surgery alone may cure some types of low-grade tumors. In high-grade brainstem tumors, or cases where disease has spread extensively, other treatments may be appropriate.

The neurosurgeon shaves a small area of the child’s hair, then makes an incision to the skull (craniotomy). This opening must be large enough for the neurosurgeon to insert instruments, and remove as much tumor and surrounding tissue as safely as possible. To get to the tumor, the neurosurgeon uses a special drill to extract a piece of bone from the skull. After the procedure, the bone is replaced and the incision is closed.

If the tumor has caused hydrocephalus, a condition in which the flow of cerebrospinal fluid (CSF) -- the liquid that bathes the brain and spinal cord -- has become blocked, the neurosurgeon may insert a silicone tube called a shunt. One end of the shunt is placed in a ventricle of the brain and the other is usually placed in the abdomen. The flow of CSF is controlled by a valve placed along the tubing. Shunts may be temporary or permanent.

You may want to ask:

  • How much of the tumor do you expect to be able to remove?
  • What complications could arise during surgery?
  • What permanent and temporary effects could this surgery have on my child’s basic abilities to function (such as swallowing, vision, hearing, walking)?
  • Could surgery damage the endocrine system? (This includes the production of hormones that control physical development including height, puberty, stress response and metabolism.)
  • Could surgery cause diabetes insipidus? (A condition affecting the body’s water balance that requires hormone replacement therapy.)
  • What kind of rehabilitation services, such as speech, physical and occupational therapies, might my child require after surgery? Where would this take place?

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Questions About Radiation

Radiation uses high-energy X-rays to kill cancer cells and is sometimes given after surgery. For some tumor types, radiation alone can provide a cure. Radiation is also given to shrink or stabilize tumor growth when surgery is not an option.

Brain tumors are treated with external beam radiation therapy (EBRT), which is administered from a source outside the body). This is different from brachytherapy, when radioactive material is inserted into or near the tumor.

In most cases radiation is an outpatient procedure that lasts about 20 minutes per session. The total dose is typically divided into daily fractions given over several weeks.

Radiation is painless, but may cause weakness, fatigue and nausea, depending on the location and size of the treated area. Hair loss is usually temporary and is limited to the part of the head where the brain is irradiated. Other side effects may include temporary hearing loss or permanent hearing deficit if the treatment is directed near the ear. Radiation may also cause dry mouth and trigger memory loss or confusion.

Many radiation oncologists are reluctant for children under 3 to undergo radiation, due to concerns about its long-term effects on brain development.

Your child’s radiation oncologist may recommend proton beam radiation, which can potentially more safely deliver radiation to the tumor by doing less damage to surrounding tissue. However, the advantage of this approach may be limited to certain types of tumors with very discernible edges. In addition, there are only a handful of centers in the United States with proton beam radiation.

Stereotactic radiosurgery is sometimes recommended for small tumors in the brain or spinal cord that cannot be removed surgically. This treatment delivers a large, precise dose of radiation in a single session or a few sessions using machines such as the Gamma Knife and Cyber Knife. Note that despite the name radiosurgery, no incision is made.

While radiation is usually delivered to the specific tumor site, whole brain and spinal cord radiation (craniospinal radiation), is given to children with certain tumor types, as well as to those whose tumor has spread throughout the brain and spine. Its side effects and “late effects” (effects sometimes seen years after treatment) are more pronounced, especially in very young children. Total hair loss follows craniospinal radiation, but hair usually regrows weeks or months after treatment.

You may want to ask:

  • Will radiation affect my child’s memory and learning ability?
  • Could radiation damage the endocrine system? (This includes the production of the hormones that control physical development including height, puberty, stress response and metabolism.)
  • Could radiation affect my child’s fertility?
  • Will my child be able to attend school during treatment?
  • Will my child need to be anesthetized before each radiation session?
  • What can I do to help my child cope with the side effects of radiation?

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Questions About Chemotherapy

Chemotherapy drugs may be delivered intravenously or directly into the cerebrospinal fluid (CSF) on an inpatient or outpatient basis; via injection usually in a hospital clinic; or taken at home by mouth. Some types of brain tumors respond very well to chemotherapy.

The side effects of chemotherapy are usually short-lived but may be very debilitating. Loss of body hair is common because these drugs work by attacking the fast-growing cells throughout the body, including those in hair roots. Hair usually grows back as soon as chemotherapy stops.

Chemotherapy is usually given in cycles, with each cycle lasting a few weeks, followed by a rest period. The number of cycles given depends on whether the chemotherapy is used to treat an existing tumor, or to prevent recurrence, as well as how the patient responds to it. Children under 3 may receive it to defer radiation.

Some chemotherapy drugs can cause kidney damage and hearing loss. Tests to check for hearing and kidney functioning should be carried out regularly.

Nausea, vomiting, diarrhea, fatigue and mouth sores are common side effects that can be eased with medication. One of the most serious risks is a drop in red blood cells (anemia), platelets (thrombocytopenia) and a type of white blood cell called neutrophils (neutropenia). If neutropenia is severe, your child will be at risk for serious infections. Blood transfusions and medications to stimulate the bone marrow to produce more neutrophils may be used. Blood levels usually return to normal after treatment.

Alternatively, your child may be prescribed a type of chemotherapy know as targeted therapy or immunotherapy. These are usually easier to tolerate. However they are still being tested in clinical trials and their effectiveness remains to be definitively established in late-phase clinical trials.

You may want to ask:

  • Do you recommend a port (a surgically implanted catheter, usually in the upper chest) or PICC line (a catheter inserted into a vein in the upper arm) for drug infusions?
  • Could chemotherapy affect my child’s fertility?
  • What can be done if my child stops eating and/or loses a lot of weight during chemotherapy?
  • How frequently will my child need blood tests to check blood cell counts?
  • Should I minimize contact with my child’s siblings and friends to reduce the likelihood of infection?
  • What can I do to help my child cope with the side effects caused by chemotherapy?
  • Will my child be well enough to attend school during part of the chemotherapy cycle?

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Questions About Inoperable Tumors

Not all brain tumor patients are candidates for surgery. Children with some inoperable low-grade tumors may be successfully treated with other therapies. But for children with diffuse tumor in the brainstem – the part of the brain responsible for vital functions such as breathing, heartbeat and blood pressure – resection (surgical removal) is not an option. If your child’s tumor has spread throughout the brain and/or spine, surgery may be viewed as more harmful than helpful. Remember that asking for a second opinion is always a good idea and that ruling out surgery does not prevent your child from being helped by other treatments.

You may want to ask:

  • What is my child’s prognosis (chance of recovery and survival)?
  • What treatments might be helpful and what are their goals?
  • How could treatment have on my child’s quality of life?
  • Would a biopsy of the tumor help identify the best treatment for my child?
  • Is my child a candidate for a clinical trial?

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Questions About Clinical Trials

Clinical trials are done so that doctors can see if a new treatment is safe and effective. Your child will need to meet very specific criteria in order to participate in a trial. Older children usually must agree to take part before a parent’s consent is accepted. Some types of drugs that have not yet been approved can be prescribed “off trial,” if they are known to be safe.

Your child’s health will be very closely monitored during a clinical trial, but it’s important to recognize that the treatment might not be helpful and could cause unpleasant side effects. A phase I study looks at safety of a new drug; phase II looks at its effectiveness; phase III compares its effectiveness to what is available already.

Insurance companies and the study’s sponsor (the federal government or a pharmaceutical company) usually cover treatment expenses and doctor’s visits, but you should check first. Because trials are voluntary, participants may opt out at any time.

You may want to ask:

  • Is the trial more likely to benefit future patients than my child?
  • If the drug appears to be effective in phase I of the trial, can my child proceed to phase II?
  • Could participation in the trial delay the onset of other treatments or trials, if we decide to drop out?
  • What are the potential side effects?
  • Would there be any costs for our family on this trial?
  • Are there any resources available to cover our family’s non-medical expenses?

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Questions to Ask Your Social Worker

Social workers help families adjust to their child’s diagnosis and treatment, but also offer practical help with issues related to financial hardship, your child’s schooling and obstacles that can undermine the treatment plan.

You may want to ask:

  • What is the best way I can support my children (including siblings) as they cope with diagnosis and treatment?
  • Are there any support groups or camps for pediatric brain tumor patients, their parents and siblings?
  • How can I claim financial aid, such as rent and vehicle repair assistance?
  • Does my child’s condition entitle us to a disabled parking placard?
  • How can I get an Individualized Education Plan (IEP) or a 504 Plan to help my child in school? (These programs provide specialized instruction or accommodations to help children with special needs, including cancer patients, fulfill their academic potential.)

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