What are the next steps?
1. Learn about your child’s diagnosis
Your child’s healthcare team is the first and best resource for information about your child’s specific situation. Many people turn to the Internet for medical information. There is a lot of good information online, but there is also information that is inaccurate or unrelated to your specific situation.
2. Get to know the healthcare team
Pediatric brain tumors require specialized care that is most often provided by a team of specialists at a large medical center or pediatric hospital. Parents or other significant caregivers are also critical members of the care team.
Your child’s care team may include:
- Pediatric Neurosurgeon: A surgeon who treats many disorders of the nervous system in children, and may be one of the first specialists you meet in the treatment of your child’s brain tumor.
- Pediatric Neuro-oncologist: A doctor who specializes in cancer of the brain and the rest of the nervous system in children and is typically the primary coordinator of your care team.
- Pediatrician: The local doctor who sees your child for common health problems. Although this physician does not specialize in brain tumor care, the primary care physician can be a great help finding specialists and helping coordinate overall care.
- Hospitalists: Physicians working within the hospital. Their care focuses on the hospital stay and the medical care needed during that stay.
- Social worker: A professional typically assigned by the hospital and/or clinic to help assess and assist with both patient and caregiver needs, from navigating insurance to obtaining services.
- PediatricNurse practitioners: Providers who oversee the management of patient care as recommended by a physician.
- Nurse navigators: These professionals can help you identify educational and support resources at all stages of an illness and can help coordinate appointments and prescriptions. They may be a primary point of contact within the healthcare system.
In addition to the main patient care team, you may also see additional specialists depending on your specific diagnosis, symptoms, and needs. They may include:
- Pediatric Endocrinologist: A physician who specializes in the system of organs that secrete and respond to hormones, which can affect a child’s growth and development.
- Neuropathologist: A physician who analyzes the tumor tissue removed during surgery and prepares a pathology report that identifies the location and type of the tumor.
- Neuropsychologist: A psychologist who specializes in understanding how cognitive, emotional, and psychological functioning work in the brain. If the patient is experiencing psychological side effects from the brain tumor or its treatment, a neuropsychologist can help assess brain damage to these areas and construct strategies to improve functioning.
- Psychiatrist: A physician who diagnoses and treats mental health issues such as depression or other mood disturbances that may result from brain tumor treatment.
- Pediatric Radiation Oncologist: A physician who oversees radiation therapy and specializes in radiation therapy for children.
- Rehabilitative specialists: The rehabilitative team can include occupational therapists, physical therapists, and speech therapists who work to help improve strength, mobility, or communication.
- Child Life Specialists: Professionals who work to reduce anxiety and distress for children during their hospital experience.
3. Get a second opinion
When dealing with a major medical condition, it is important to have confidence in your child’s medical team and their treatment choices. Seeking a second opinion from a qualified institution is a good way to ensure you feel well prepared for the journey ahead. You are your child’s best and most important advocate when it comes to medical care. To identify potential institutions for second opinions, contact the ABTA. Learn more about getting a second opinion.
4. Learn about treatment options
Treating brain and spine tumors in children is different than treating adults. Children’s brains and bodies are still developing, so there are different considerations and standards of care. For most children, treatment starts with surgery. A biopsy following surgery will help to classify and grade the tumor. Following surgery, your child may need additional treatment. Possible therapies and tests include:
- Chemotherapy to try to stop tumor growth
- Conventional radiation therapy to kill or prevent tumor cells from growing
- Stereotactic radiosurgery, a precise form of radiation therapy
- Stem-cell rescue, blood and bone marrow transplantation
- Interventions to address symptoms of the tumor or treatment side effects
- Rehabilitation to regain lost strength and skills
- Ongoing follow-up care to screen for tumor recurrence and manage late effects of treatment.
5. Ask about clinical trials
Your doctors may suggest that your child be enrolled in a clinical trial. Clinical trials offer patients access to the newest therapies while they are being developed. The ABTA’s clinical trials brochure has a wealth of information to assist parents who want to better understand the risks and benefits of clinical trials, patient rights and protections, and more. TrialConnect® is a free and confidential service offered by the ABTA to help match patients with active clinical trials. A single, short, secure questionnaire matches patients to enrollment criteria for over 100 brain tumor clinical trials. Once an appropriate trial is located, TrialConnect staff will help you connect with the trial coordinators. TrialConnect information is offered in English and Spanish by calling (877) 769-4833.
6. Keep careful records
It is important to keep records of your child’s treatment. Survivors of childhood brain tumors need to be monitored throughout their lives by doctors who are aware of their medical history. As your child matures, his or her future doctors will need to know the history of the tumor, treatments completed, specific procedures done, and drugs used. Sometimes survivors of childhood brain tumors experience effects later on in their lives from the treatments they have received. Having access to detailed medical information will help your child monitor and address any late effects of treatments.