We understand how overwhelming a diagnosis of diffuse pontine glioma can be. Right now, you probably have a lot of questions. How dangerous is diffuse pontine glioma? What is the very best treatment? What do we do next?
We’ve tried to provide some answers to those questions in the following pages, and our expert pediatric subspecialists can explain your child’s condition fully when you meet with us.
How are diffuse pontine gliomas classified?
The World Health Organization classification scheme includes 4 grades of glioma, according to how the cells look under a microscope.
- grade I (benign)
- grade II (fibrillary)
- grade III (anaplastic – refers to lack of structure in the cell)
- grade IV (glioblastoma multiforme – the most serious kind of tumor)
Since diffuse pontine gliomas are not generally biopsied, it can be difficult to assign a grade to one of these tumors. When biopsied, they are usually grade III or grade IV; occasionally they are grade II.
That being said, diffuse pontine gliomas usually progress like grade IV glioblastoma multiforme tumors. These are the most aggressive kind of astrocytic tumor, and they usually have the following characteristics:
- an increased number of cells
- abnormal cells and nuclei
- the cells reproduce rapidly
- the cells die quickly
- increased growth of blood vessels
These tumors are aggressive, and will invade normal brain tissue.
Children's Hospital and Dana-Farber Cancer Institute are conducting many research studies that will help clinicians better understand and treat diffuse pontine glioma. For more information on our current research initiatives, see the Brain Tumor Program.
What causes diffuse pontine glioma?
As a parent, you undoubtedly want to know what may have caused your child’s tumor. However, the cause of diffuse pontine glioma is not currently understood.
There are no known factors or conditions that make your child more or less likely to develop this type of tumor. It might be reassuring to know that there’s nothing that you could have done or avoided doing that would have prevented the tumor from developing.
What are the symptoms of a diffuse pontine glioma?
Symptoms usually develop very rapidly prior to diagnosis, reflecting the fast growth of these tumors. Most patients have less than three months and many less than three weeks of symptoms prior to diagnosis.
While each child may experience symptoms of a diffuse pontine glioma differently, some of the most common include:
- rapidly developing problems controlling eye movements, facial expressions, speech, chewing and swallowing (due to problems in the cranial nerves)
- weakness in the arms and legs
- problems with walking and coordination
Keep in mind that the symptoms of a brain tumor may resemble other, more common conditions or medical problems. Always consult your child's physician for a diagnosis.
Q: What is the expected outcome after treatment?
A: Unfortunately, the prognosis for diffuse pontine glioma tumors remains poor. Experimental chemotherapy delivered concurrent with radiation therapy is actively being investigated in the treatment of diffuse pontine gliomas.
Q: Where will my child be treated?
A: Children treated through Dana-Farber/Children’s Hospital Cancer Center receive outpatient care at the Jimmy Fund Clinic on the third floor of the Dana Farber Cancer Institute. If your child needs to be admitted to the hospital, she will stay at Children’s Hospital Boston on the ninth floor of the Berthiaume building.
Q: What services are available to help my child and my family cope?
A: We offer many services to help you, your child and your family get through this difficult time. Read about our support services.
Q: What kind of supportive or palliative care is available for my child?
A:When necessary, our Pediatric Advanced Care Team (PACT) is available to provide supportive treatments intended to optimize the quality of life and promote healing and comfort for children with life-threatening illness. In addition, PACT can provide psychosocial support and help arrange end-of-life care when necessary.
Questions to ask your child’s doctor
After your child is diagnosed with a brain tumor, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.
Lots of parents find it helpful to jot down questions as they arise – that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.
If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.
Some of the questions you may want to ask include:
- Has my child’s brain tumor spread?
- How long will my child need to be in the hospital?
- What are the possible short and long-term complications of treatment? How will they be addressed?
- What is the likelihood of cure?
- What services are available to help my child and my family cope?
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