Treatments for Craniopharyngioma in Children

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How is craniopharyngioma treated?

Almost always, we attempt to remove as much of the tumor as is safely possible and, hopefully, cure your child by removing all of it. We have been able to do this in about 65 percent of our patients.

In the vast majority of children with craniopharyngiomas, the tumors grow from the pituitary stalk region; meaning that the removal of the tumor invariably results in a full and complete pituitary hormonal deficit. These children, therefore, require life-long replacement with hormones and must remain under the care of an endocrinologist throughout their growth and development.

Even if surgery is completely successful in removing the tumor, there is still a possibility that the tumor could regrow from small fragments of the tumor inadvertently left behind at the operation. So your child may require another operation to remove these recurrences.

Surgery may not sound pleasant, but the risks of surgery are usually well worth the benefits of reducing the intracranial pressure, preserving vision and achieving a long-term cure.

Why surgery instead of radiation?

Radiation therapy is an important part of treatment strategy in many cases. Although these tumors are "benign," their growth can be frequently slowed or stopped by radiation therapy.

However, many children who come to the hospital with a craniopharyngioma are often very sick with pressure symptoms or visual deficits. The radiation therapy does not work quickly enough to reduce these symptoms and surgery is often required immediately to deal with the pressure of the tumor and cyst.

Radiation treatment is an issue that you should explore in detail with your child's physicians when treatment options are being reviewed. Your child's age, symptoms, preoperative hormonal status, and size and configuration of the tumor are among the many factors which need to be taken into consideration when tumor treatment is planned.

My surgeon has recommended focused radiation treatment (stereotactic radiosurgery, Gamma Knife, proton beam) for my child's tumor; is this reasonable?

For some children, these highly focused, single-dose radiation techniques are a useful method to treat areas of tumor that cannot be successfully removed by any other means.

Because these techniques are intended to destroy all tissue that has been targeted, they're best used only for small tumor areas that are not touching structures whose function would be harmed by this type of radiation.

For example, if the tumor is near or touching the brain stem or optic nerves, these treatments may not be safe. It's definitely something to talk about in detail with your child's physician.

What is the recommended long-term care for my child?

Our experience is that your child will need lifetime follow-up care because the tumor can regrow. For this reason, we will follow your child yearly until 10 years after surgery and then every two years indefinitely.

Children should visit a survivorship clinic every year to:

  • manage disease complications
  • screen for early recurrence of cancer
  • manage late effects of treatment

A typical follow-up visit may include some or all of the following:

  • a physical exam
  • laboratory testing
  • imaging scans

Through the Stop and Shop Neuro-Oncology Outcomes Clinic at Dana-Farber Cancer Institute, children are able to meet with their neurosurgeon, radiation oncologist, pediatric neuro-oncologist and neurologists at the same follow-up visit.

  • Our pediatric brain tumor survivorship clinic is held weekly.
  • In addition to meeting with your pediatric neuro-oncologists, neurologist and neurosurgeon, your child may also see one of our endocrinologists or alternative/complementary therapy specialists.
  • Alternative/complementary therapy specialists, and school liaison and psychosocial personnel from the pediatric brain tumor team are also available.
  • Children needing rehabilitation may meet with speech, physical, and occupational therapists during and after treatments.
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- Sandra L. Fenwick, President and CEO

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