Craniopharyngioma is a brain tumor that affects children.
with craniopharygioma are treated at Dana-Farber/Boston Children's through our Brain Tumor Center, a world-renowned destination for children with malignant and non-malignant
brain and spinal cord tumors. Our brain tumor specialists have
extensive expertise in treating all types of neural tumors, including craniopharyngiomas. Our patients receive care from neuro-oncologists, neurosurgeons, neurologists, and pediatric
Brain tumors can cause a variety of symptoms in children based primarily on
the location of the tumor. Keep in mind that the symptoms of a brain tumor may
resemble other more common conditions or medical problems. It is important to
consult your child's physician for a diagnosis.
Craniopharyngioma symptoms can
As a parent, you undoubtedly want
to know what may have caused your child’s tumor. It’s important to understand
that these and other brain tumors most often occur with no known cause. There’s
nothing that you could have done or avoided doing that would have prevented the
tumor from developing.
The first step in treating your child is forming an accurate
and complete diagnosis. Craniopharyngioma diagnostic tests include:
Some craniopharyngiomas are very big at the time of diagnosis, and your child may have evidence of increased pressure on the brain. This can be diagnosed with an MRI. If this is the case, the tumor may have to be surgically removed immediately. If your child does not have any evidence of increased pressure, your child’s physician may order a number of different tests,
After we complete all
necessary tests, our experts meet to review and discuss what they have learned
about your child's condition. Then we will meet with you and your family to
discuss the results and outline the best possible treatment options.
physician will determine a specific course of treatment based on several
factors, including your child's age, overall health and medical history, the type,
location, and size of the tumor and the extent of the disease.
Craniopharyngiomas treatments include:
Clinical trials, or research studies
evaluating new treatment approaches, are a major offering at Dana-Farber/Boston
Children’s Cancer and Blood Disorders Center. For many children with
brain tumors or other rare or hard-to-treat conditions, clinical trials provide
Dana-Farber/Boston Children’s researchers are working on developing new and
better treatment options. It’s possible
that your child will be eligible to participate in one of our brain tumor clinical trials.
In addition to launching our own clinical trials, we also offer trials
available through collaborative groups such as the Children's Oncology Group
(COG) and the Pacific Neuro-oncology Consortium (PNOC). We are also the New England Phase I Center of the
Children's Oncology Group. If your child has progressive or recurrent tumors,
she may be eligible for a number of experimental therapies available through
these groups, or from one of our independent clinical investigators.
Participation in any clinical trial is
completely voluntary. We will take care to fully explain all elements of the
treatment plan prior to the start of the trial, and you may remove your child
from the medical study at any time.
The prognosis for children with craniopharyngioma is
generally good, with an 80 to 90 percent chance of a cure. Recurrences can occur up to two years after
surgery. Therefore, specialized ongoing follow-up care is extremely important.
treated for a craniopharyngioma can have difficulties with excess weight gain
and sleep and should visit a survivorship clinic to manage disease
complications, screen for recurrence and
manage late treatment side effects. A typical follow-up visit is likely to
include a physical exam, laboratory testing and imaging scans. We will
follow your child yearly until 10 years after surgery and then every two years
Through our brain tumor survivorship clinic, the Stop
& Shop Family Pediatric Neuro-Oncology Outcomes Clinic, children
are able to meet with their neurosurgeon, radiation oncologist, pediatric
neuro-oncologist and neurologists at the same follow-up visit. Our
multidisciplinary approach and depth of expertise will give your child on-site
access to endocrinologists, neuro-psychologists and alternative/complementary
therapy specialists. School liaison and psychosocial personnel from the
pediatric brain tumor team are also available. In addition, children needing rehabilitation may meet with speech, physical, and occupational therapists during and after their visit.
Watch the former director of the Stop & Shop Family
Pediatric Neuro-Oncology Outcomes Clinic, Peter Manley, MD, discuss the issues that
survivors of childhood brain cancers should know.