Optic Pathway Glioma in Children

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"The advantage of having seven dedicated pediatric neurosurgeons who do nothing but gliomas means that we've got exactly the right expertise."

Mark Kieran, MD, PhD, clinical director, Brain Tumor Center

If your child has been diagnosed with an optic pathway glioma, you’ll have concerns and questions about his health, treatment, recovery and other issues. It may comfort you to know that these types of brain tumors have a very high survival rate, above 90 percent and that Dana-Farber/Boston Children’s Cancer and Blood Disorders Center is a world leader in treating childhood cancer. We specialize in innovative, family-centered care that supports your child and family every step of the way.

Optic pathway gliomas are brain tumors that arise in or around the optic nerve (nerve that connects the eye to the brain). They are serious, but have an extremely high cure rate.

An optic pathway glioma is most common in children who have the genetic condition neurofibromatosis 1 (NF1). In these cases, about two-thirds of the time, the tumor stop growing and disappears forever on its own without treatment.

  • Optic pathway gliomas account for 5 percent of all childhood brain tumors.
  • They may affect one eye (unilateral) or both eyes (bilateral).
  • The majority of people (75 percent) with optic pathway gliomas are younger than 10; most are younger than 5 at the time of diagnosis.
  • Girls and boys are equally affected.
  • There are no racial or ethnic groups that are at more risk than others.
  • Due to the position of the optic nerve, a tumor may also affect your child’s endocrinological (hormone) system.
  • Symptoms of optic pathway glioma may include worsening vision, growth problems or precocious puberty.
  • Treatment options may include chemotherapy, surgery and radiation.
  • Cure rate is above 90 percent.
  • Blindness can occur, but only occurs in 5 percent of cases.

How Dana-Farber/Children’s Hospital Cancer Center approaches optic pathway gliomas

The Dana-Farber/Boston Children’s Cancer and Blood Disorders Center is an integrated pediatric oncology program that provides all the services of both a leading cancer center and a pediatric hospital. This team approach ensures that your child's treatment plan is carefully developed and coordinated. We integrate expertise from the following specialists:

  • pediatric oncologists, surgical oncologists and radiation oncologists
  • pediatric experts from every medical subspecialty, such as ophthalmology and radiology
  • highly skilled and experienced pediatric oncology nurses
  • psycho-oncologists, resource and education specialists, financial coordinators, Child Life specialists, pharmacists and many others to help manage your child’s physical, emotional and everyday needs
  • unique programs like Home Visits, an outreach program that helps newly diagnosed families adjust to life after a cancer diagnosis

We hold a weekly brain tumor clinic for newly diagnosed children currently receiving treatment. Each time you come for an appointment, you meet with every specialist on your child’s team, from your pediatric neuro-oncologist, neurologist and neurosurgeon to your pediatric endocrinologist, psycho-oncologist and school liaison. We also offer access to:

  • high-tech resources like the intra-operative MRI, which allows our pediatric neurosurgeons to visualize the tumor as they operate with MRI scans. This means they can remove as much of the tumor as possible, and sometimes eliminate additional surgeries.
  • expert neuropathological review, using advanced molecular diagnostic testing, to identify your child’s exact type of tumor. This information helps predict which treatments are more likely to work.
  • unique Phase I clinical trials that offer treatment options beyond standard therapy
  • one of the nation’s few dedicated pediatric brain tumor survivorship programs. This weekly clinic offers ongoing care to manage late effects caused by your child’s tumor or the treatment he received.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944