After the Diagnosis
When you learn that a child you love has a brain tumor, your life changes. You suddenly find yourself in the midst of a critical medical concern that could go on for many years. Dealing with this new reality can be overwhelming. There are lots of questions, lots of unknowns. We understand your situation and we can help.
Here you will find information and resources to address many of the concerns that emerge soon after a child is diagnosed with a brain tumor.
- Doing Medical Research
- The Care Team
- Treatment Options
- Second Opinions
- Clinical Trials
- Maintain Health Records
Doing Medical Research
Your medical team is the first and best resource for information about your child’s specific situation. The American Brain Tumor Association (ABTA) is also an outstanding resource to increase your understanding and confidence throughout the treatment process.
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. To ensure you are accessing well-researched information, turn to trusted resources like the American Brain Tumor Association. You may also want to review published medical journal articles related to your child’s diagnosis. Medical journal research can be done online and the ABTA has instructions to help you get started.
The Care 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. The team may include pediatric neurosurgeons, pediatric oncologists, pediatric radiation oncologists, rehabilitation specialists in occupational therapy, physical therapy and speech therapy, pediatric nurse specialists, social workers, child life specialists and others. Additionally, since most of these programs are at teaching hospitals, medical residents and fellows will be involved in your child’s care.
Parents or other significant caregivers are also critical members of the care team. You are your child’s best and most important advocate when it comes to medical care. You will have lots of questions. You will have to make many decisions. Talk with your medical team early and often. It can take some time for all of the pieces to fall into place. Be patient with yourself. There can be a good deal to learn.
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. For more information see our Treatments page.
Following surgery, additional treatment may be required. Possible therapies include:
- Conventional radiation therapy
- Stereotactic radiosurgery, a precise form of radiation therapy
- Stem-cell rescue, blood and marrow transplantation
- Interventions to address side effects of the tumor or the treatment
- Rehabilitation to regain lost strength and skills
- Ongoing follow-up care to detect recurrence of the tumor and manage late effects of treatment
When you are dealing with a life-threatening condition, you need to have confidence in your medical team and treatment choices. Seeking a second opinion from a qualified institution is a good way to ensure you feel well prepared for the journey ahead. Click here to read more about getting a second opinion.
To identify potential institutions for second opinions, contact the ABTA CareLine at (800) 886-2282 or ABTAcares@abta.org to request a Physician Resource List.
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 can help you better understand clinical trials. 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 in a trial and more.
We can also help you identify active clinical trials that may be appropriate for your child. The ABTA offers a service that links brain tumor patients with appropriate clinical trials based on the patient's tumor type and treatment history. TrialConnect® is a free and confidential service. TrialConnect® information is offered in English and Spanish by calling (877) 769-4833. 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.
Additional information on clinical trials and one-click access to resources and databases is also available through the ABTA.
Maintain Your Child's Medical Information
It is important that you 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 into adulthood, your child’s future doctors will need to know the history of the tumor, treatments completed, specific procedures and drugs used. Sometimes survivors of childhood brain tumors experience effects later on in their lives from the treatments they have received. Access to detailed medical information will help your child monitor and address any late effects of treatment.