What to Do If Your Child Is Diagnosed With a Brain Tumor

7 questions to ask the specialists
Parents receiving an update on their daughter's condition from a doctor in the hospital

It’s difficult to think clearly if you learn your child has a brain tumor. You may feel paralyzed and unsure what to do next. There are two things you can do right away to ensure your child receives the best treatment and support. These include: 1.) finding an experienced team of specialists and 2.) taking good care of yourself so you can support your child through the treatment process.

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How to find the right specialists

“Most parents and families are just in shell shock when they learn their child has a brain tumor,” says Violette Recinos, MD, Section Head for Pediatric Neurosurgical Oncology at Cleveland Clinic. “But once the shock has settled down, the first and most important thing to do is seek out the care of specialists who have experience in treating brain tumors.”

Dr. Recinos advises parents to focus on medical centers that take a multidisciplinary approach, where they have neurosurgeons, oncologists and radiation oncologists on staff and extensive experience with treating pediatric brain tumors.

“Major academic centers would be the main place I would focus on sending my child to, where they will have what we call a multidisciplinary tumor board,” Dr. Recinos says.

Why it’s important to take care of yourself, too

Dr. Recinos says parents also need to take care of themselves overall, emotionally and physically, so they can stay healthy and clear-headed.

“Parents need to focus on the medical treatment their child needs, but they also need to focus on their own well-being and emotional health,” Dr. Recinos says. “They need to take care of themselves throughout the process, because it can certainly be very stressful.”

Remember: A clear diagnosis takes time

According to the American Childhood Cancer Association, brain cancers account for about 15 percent of pediatric cancers. They are the second-most common cancer in children after leukemia.

But don’t jump to conclusions after the initial diagnosis of a mass in your child’s brain, Dr. Recinos says.

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“Usually, when parents are told there’s a mass, it’s not even positive that it’s a brain tumor,” she says. “So the answers to their typical first questions – What does that mean? What is the prognosis for my child? – will take time to answer, depending on our plans for that patient, whether it’s a biopsy or a surgical resection.”

Questions you should ask

Once doctors confirm a brain tumor, Dr. Recinos advises parents to seek answers to these questions:

  1. Where is the tumor located?
  2. What are our options?
  3. What are our next steps?
  4. What can we expect from the next steps?
  5. If the next recommended step is surgery, what are the potential risks and benefits of the procedure?
  6. Are there options other than surgery?
  7. What should we expect for recovery time from surgery?

Initially, the doctors may not know exactly what type of tumor your child has, or what the prognosis is until after further testing. Your best approach, then, is to try to get a clearer understanding of what the big picture is and what the next steps will be.

You also will want to assess the likely risks and benefits of any treatment options, based on what you know at that time, Dr. Recinos says.

Consider support groups for you and your child

As another important early step, Dr. Recinos suggests finding a support group.

The multidisciplinary team or the hospital’s Child Life office can put you in touch with families who have been through the experience you face.

“A lot of the scary part of this is the unknown,” she says. “So in certain situations, it can help the child and the parents to have an idea of the treatments that they are going to go through and see that there’s a light at the end of the tunnel.”

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How pediatric and adult brain tumors compare

Some types of medications and treatments for brain tumors that doctors use successfully on adults can also be used to treat children. However, tumors sometimes behave differently in adults, based on the genetics of that particular tumor, Dr. Recinos says.

“There are tumors that are more frequent in children than in adults,” she explains. “And there are certain types of tumors even within the same family of tumors that behave differently in young people than in adults.”

The prognoses in children will vary, too. But, with the same diagnosis of tumor type, children typically have a better prognosis.

Dr. Recinos comments about how resilient the pediatric brain is, which helps with recovery. She says children have a lot more reserves to recover because their brains are still growing.

“Children’s brains are more plastic, meaning some areas are able to relearn functions in the area where the tumor was better than the adults or even in an aging brain, so those kids may recover better than their adult counterparts.”

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