Congratulations! You’ve gotten your child through treatment for pediatric low-grade glioma (pLGG). The hardest part is over. You’ll need to stay on top of follow-up care for the next few years and watch out for signs of possible problems. But you have every reason to look to the future with optimism.
“With pediatric low-grade gliomas, kids are usually long-term survivors and we expect them to live well into a normal life span,” says Stacie Stapleton, MD, chief of oncology and director of pediatric neuro-oncology at Johns Hopkins All Children’s Hospital in St. Petersburg, FL.
What happens next depends on a few things. Here’s what you need to know.
Was the Tumor Completely Removed?
Sometimes, doctors remove the whole tumor with surgery, and there’s no need for further treatment like chemotherapy or radiation. In that case, your child will go in for routine MRIs for as long as 10 years, and then – as long as there haven’t been any changes – the follow-up will stop.
The MRIs will happen more often at first and become less often as time goes on. “We usually do them every 3 months for the first year, then every 6 months for a couple of years, and then yearly for about 5 years, and then we stop,” Stapleton says.
Did Your Child Have Systemic Therapy?
Sometimes, the tumor is in a part of the brain that makes it impossible to remove without affecting important brain functions. In that case, the surgeon will remove as much of the tumor as they safely can. To stop the tumor from growing any more, kids get targeted therapy or chemotherapy.
Targeted therapy is an option for kids whose tumors have a certain genetic makeup. Kids whose tumors don’t match that profile get chemotherapy.
Either way, after they finish targeted therapy or chemotherapy, kids have similar follow-up to those who had only surgery. That is, they get several MRIs during the first few years, then two a year for a couple of years, then one a year for up to 5 more years. As long as there’s no sign of tumor growth, the MRI follow-up may stop at that point.
But systemic therapies – medicines like chemotherapy and targeted therapy that go through the entire body – come with other long-term risks that doctors will need to monitor for.
With chemotherapy, kids get very low doses over a long period of time to minimize the risk of problems. But doctors will still want to see your child to check for:
- Hearing loss
- Kidney problems
- Bone marrow suppression, which causes fewer blood cells to be made
They will probably schedule the tests around routine MRIs, Stapleton says, to check your child more often the first few years and taper off as time goes on.
Targeted therapy hasn’t been a part of pLGG treatment for as long as chemotherapy has. For that reason, while doctors believe it’s less toxic than chemotherapy, the truth is that they don’t know as much about its long-term effects. The care team will likely recommend some level of routine follow-up to make sure that your child doesn’t develop any problems related to the targeted therapy later on.
Did Your Child Have Radiation?
Doctors are turning to radiation less and less often as a treatment for pLGG. It’s very effective, but it comes with a high risk for short- and long-term side effects. Still, there’s a subset of kids for whom the benefits outweigh the risks. If your child falls into this category and got radiation, they’ll need additional follow-up to watch out for radiation-related risks.
Radiation to the brain comes with several serious risks for kids, including:
- New radiation-related tumors later in life
- Learning problems
- Hormone problems
New research suggests a risk for other problems, too.
“Depending on how young the child was when we treated them, if they had to use radiation, these kids are also at risk for psychosocial problems in the years ahead,” says Roger Packer, MD, director of the Brain Tumor Institute at Children's National Hospital in Washington, D.C.
Studies have shown that in kids who’ve received radiation to the brain, social development might slow down over time compared to other kids. This could affect their relationships with adults and other kids, their school performance, and future achievements.
“We have to be attuned to this and tailor our follow-ups to ask the right questions and see what help the child needs in school or what support they need for their psychosocial well-being,” Packer says.
Children who had radiation for pLGG may need longer-term follow-up to watch out for secondary tumors. They may also need psychological support for their social development.
Does Your Child Have an Inherited Cancer Predisposition Syndrome?
Some children get pLGG because they were born with a gene mutation that raises their risk for certain cancers. This is called a cancer predisposition syndrome. Different syndromes raise risk for different cancers. If you learned during your child’s diagnosis and treatment that they have a cancer predisposition syndrome, they may need lifelong monitoring for the cancers connected to that syndrome.
If you are not sure, ask your child’s doctor whether they were tested for a cancer syndrome, what the results were, and what kind of follow-up is recommended.
Know the Signs of a Recurrence
Be aware of the signs that the tumor might be coming back. Call your child’s doctor if your child has:
- The original tumor symptoms, such as headache or vision changes
- Serious headaches that aren’t normal for them
- Clusters of symptoms together, such as headache, vision changes, and vomiting
- A seizure
- Any kind of delay in development
- Any other symptoms of brain tumor, such as clumsiness, walking problems, confusion, or sleepiness
If you’re concerned about your child between follow-up visits, don’t wait until the next scheduled visit that may be months away.
“We have a very low threshold to do any additional monitoring either between any of those time points or after, depending on the symptoms or the concerns,” Stapleton says.
Know the Signs of Other Problems
Childhood cancer treatment and its collateral effects can take a toll on a child, but some problems might be easy to miss.
“Sometimes we're just so happy that they're alive and free of disease that we don't focus as much as we should on the other aspects of their well-being,” Packer says.
But parents shouldn’t discount the effect that years of illness and cancer treatment can have on the emotional well-being of a child.
“Some children spend the first few years of their lives receiving one therapy after another,” Packer says. “Because of the location of the tumor, they may be intellectually challenged, fall behind in school, be small for their age, and all of these things can snowball until the child feels marginalized and needs more support.”
Watch out not only for signs of a tumor recurrence but also for signs that your child needs some other type of help, Packer says.
That said, Packer stresses, “We expect every child with a low-grade glioma to live. Regardless of how large the tumor is or where it is, we expect the child to survive.”
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Stacie Stapleton, MD, chief of oncology, director of pediatric neuro-oncology, Johns Hopkins All Children’s Hospital, St. Petersburg, FL.
Roger Packer, MD, director, Brain Tumor Institute and Gilbert Neurofibromatosis Institute, Children's National Hospital, Washington, DC.
Neoplasia: “Pediatric low-grade glioma: Targeted therapeutics and clinical trials in the molecular era.”
Boston Children’s Hospital: “Long-term survival of most common childhood brain tumor is high, but lower if radiation was used,” “Low-grade gliomas.”
Neuro-Oncology: “Trajectories of psychosocial and cognitive functioning in pediatric patients with brain tumors treated with radiation therapy.”
University of Rochester Medical Center: “Bone Marrow Suppression During Cancer Treatment in Children.”
