If your child has been diagnosed with a pediatric low-grade glioma (pLGG), you may be wondering where, exactly, you should go for medical care. For starters, you’ll want to look for a treatment center that specializes in pediatric brain cancer, advises Yasmin Khakoo, MD, director of the MSK Kids Child Neurology Program at Memorial Sloan Kettering Cancer Center in New York City.

That’s because pLGGs are relatively rare. In the United States, there are about 3,400 cases of childhood brain and central nervous system tumors diagnosed each year, with gliomas accounting for about 50 percent of them.

As a result, only some doctors have the right expertise to treat them, says Dr. Khakoo.

A tertiary center — a highly specialized medical center that’s usually associated with a university — is a good facility to seek out for treatment of a pediatric brain tumor, says Aimee Sato, MD, a pediatric neuro-oncologist and the medical director of the Neurofibromatosis Program at Seattle Children’s Hospital.

“Your primary care provider can provide you with a referral,” she says. You can also use the American Brain Tumor Association’s Treatment Center Guide to search for institutions and hospitals that specialize in treating pediatric brain tumors.

“Kids are not just little adults,” says Dr. Sato. “The treatment of their tumors is different from that of adults.” Not only do pediatric neuro-oncologists treat more brain tumors than other doctors do, but a children’s center can also be the most comforting environment for your child to receive care. They also “have new medications that many smaller institutions may not be as familiar with, as well as access to clinical trials,” she notes.

At a pediatric brain cancer treatment center, you’ll have access to a wide range of experts. Putting together the right care team can help you stay on top of any changing needs your child may have over the years. Here are a few specialists you’ll want to consider.

Pediatric Neuro-Oncologist

Your primary point of care, a pediatric neuro-oncologist is a physician who specializes in treating brain and central nervous system tumors in children.

They can prescribe medications and targeted therapies for your child, says Khakoo.

Pediatric Neurosurgeons

Pediatric neurosurgeons are trained to do surgery on brain and spinal cord tumors in children. It’s not always possible to remove all brain tumors, though, especially if the tumor is located in an area that is difficult to reach or may be too risky to operate on (such as the nerves that connect to the eyes). Sometimes, only part of the tumor is removed.

Pediatric Radiation Oncologist

If your child’s tumor is best treated with radiation, a pediatric radiation oncologist will use radiation therapy — aka high-energy radiation — to shrink or eradicate the tumor.

Radiation therapy in children with low-grade gliomas is rare, says Khakoo. But if it’s deemed necessary, she recommends finding a pediatric radiation oncologist. These specialists are trained to minimize radiation exposure to children, who are more vulnerable to the effects of the radiation, she says.

Pediatric Oncology Nurse

Pediatric oncology nurses specialize in taking care of children with cancer in a hospital or clinic. They often work alongside the rest of the team to help coordinate and provide care for your child.

Child Life Specialists

These experts are trained to help ease some of the anxiety your child may feel when it comes to hospital stays, medical tests, and treatments. They do so by using distraction techniques, medical play therapy, and other recreational activities.

Dietitian

If your child has caloric or nutrition requirements, a dietitian can give your family advice about healthy eating.

Social Worker

Social workers can offer practical and emotional support to families of children undergoing treatment for a tumor. For example, a social worker can provide you with resources about financial aid, transportation, and housing, if needed.

Speech Therapist

If your child is having problems speaking or swallowing due to the tumor or surgery, a speech therapist can help develop strategies to address these issues.

Physical or Occupational Therapist

Physical therapists help children regain any large-muscle movements they may have lost from the tumor or the treatment by recommending exercises and stretches. Occupational therapists can also help children regain small-muscle movements, such as hand-eye coordination.

Every Care Team Is Unique

Not every child will need to see every specialist, says Khakoo. Moreover, many children will not need to receive ongoing care for a low-grade glioma the rest of their lives. “A lot of times, these kinds of tumors can stop or regress during the teen or late teen years,” she says.

After a child has been treated with surgery or radiation, for example, the doctor will continue to monitor symptoms for about five to 10 years, she says. If everything is stable, then continuing care may not be necessary.

That said, it’s possible for children to keep receiving treatment for many years at the medical center that provided their pediatric care. “We have patients who are 25 or 30 that we still take care of,” says Khakoo.

Your care team can help you develop a plan that best suits your child and revise it as needed through the years.

How to Be Your Child’s Best Advocate

When your child is initially diagnosed, you might need a little time to process the information. That’s okay. Remember to give yourself some grace. “Don’t expect yourself to be an expert in the beginning, and allow yourself to take in information in small chunks,” says Sato. “We don’t expect you to remember the majority of the information that’s been said at first.”

It’s also important to feel empowered to ask questions. Don’t be afraid to ask for clarification or request a follow-up meeting, Sato notes. You may want to ask for more information about which type of surgery or treatment is recommended, what the risks and side effects may be, and whether other therapies are an option.

If you’re feeling uncertain about anything, it’s alright to get a second — or even third — opinion. “Asking for a second opinion is not insulting. It’s your right as a parent,” says Sato. Often, these secondary opinions can be gotten virtually, through telemedicine.

The Takeaway

If your child is diagnosed with a pediatric low-grade glioma, seeking care at a specialized treatment center gives you access to healthcare professionals who are experts in this field.
Your child’s pLGG care team may include a variety of specialists, including pediatric oncology experts and providers who offer a wide range of physical and emotional support.
Not every child needs to see every specialist. You can develop a care team individualized to your child’s needs and adjust it as needed over time.

Conor Steuer, MD

Medical Reviewer

Castle Connolly Top Doctor

Conor E. Steuer, MD, is medical oncologist specializing in the care of aerodigestive cancers, mesothelioma, and thymic malignancies and an assistant professor in the department of hematology and medical oncology at the Emory University School of Medicine in Atlanta. He joined the clinical staff at Emory's Winship Cancer Institute as a practicing physician in July 2015. He currently serves as chair of the Lung and Aerodigestive Malignancies Working Group and is a member of the Discovery and Developmental Therapeutics Research Program at Winship.

Dr. Steuer received his medical degree from the New York University School of Medicine in 2009. He completed his postdoctoral training as a fellow in the department of hematology and medical oncology at the Emory University School of Medicine, where he was chief fellow in his final year.

He has been active in research including in clinical trial development, database analyses, and investigation of molecular biomarkers. He is interested in investigating the molecular biology and genomics of thoracic and head and neck tumors in order to be able to further the care of these patient populations. Additionally, he has taken an interest in utilizing national databases to perform clinical outcomes research, as well as further investigate rare forms of thoracic cancers.

Steuer's work has been published in many leading journals, such as Cancer, the Journal of Thoracic Oncology, and Lung Cancer, and has been presented at multiple international conferences.

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Maria Masters

Author

Maria Masters is a contributing editor and writer for Everyday Health and What to Expect, and she has held positions at Men's Health and Family Circle. Her work has appeared in Health, on Prevention.com, on MensJournal.com, and in HGTV Magazine, among numerous other print and digital publications.