Frequently Asked DIPG Questions

A compiled list of frequently asked DIPG questions are below. If you have a specific question you cannot find the answer to, feel free to contact us.

General Questions

What is DIPG?

DIPG is a type of pediatric brain tumor found in an area of the brainstem know as the pons. The name diffuse intrinsic pontine glioma describes how the tumor grows, where it is found, and what kinds of cells give rise to the tumor.

Is DIPG benign or malignant?

DIPG is a malignant tumor and should be treated immediately upon diagnosis.

Where in the brain is DIPG located?

DIPG tumors are found in a part of the brainstem called the pons. The pons is responsible for a number of important bodily functions, like breathing, sleeping, bladder control, and balance. Because these functions are vital to survival, the pressure from the growing tumor is very dangerous.

Do adults get DIPG?

Although young adults can develop DIPG, this disease is largely pediatric with a median patient age of 6-7 years old.


What symptoms does DIPG cause?

Double vision, weakness in the arms and legs, loss of balance, difficulty walking, clumsiness, headaches, nausea/vomiting, fatigue, or difficulty in controlling: eye and eyelid movement, facial expression, chewing and swallowing, speaking, or urinating are all symptoms of DIPG.


Why/how did I get DIPG? What causes DIPG?

Researchers do not yet know what causes DIPG. There is no evidence that indicates DIPG is caused by environmental factors or specific inherited genetic variations.

Is DIPG genetic?

There is no evidence that indicates DIPG is caused by specific inherited genetic variations.

Recently Diagnosed

What should I do after being diagnosed? What are the next steps?

When you or your child is diagnosed with DIPG, there are a few steps that can provide direction and help with treatment options. You will want to perform several steps such as seeking a second opinion and enrolling into the DIPG Registry. 

How do I get a second opinion for a DIPG diagnosis?

This can be done either directly from the DIPG Registry or through a peer hospital. This is important because each DIPG can appear different on initial scans.

Should I travel to see a DIPG specialist?

Given the seriousness of the disease, patients often travel to be seen and treated by DIPG specialists. Contact us to get some recommendations that are closest to you.

How do I connect with other families?

Contact us to be connect to a parent who is willing to provide on-on-one support and connect you with other families.

What kind of support is available for DIPG patients and families?

A Diagnosis of DIPG can be devastating, but it is important to know that you don't have to go at it alone. Medical, financial, and family support are available.


How do you treat DIPG?

Radiation therapy is the standard treatment for children with diffuse intrinsic pontine gliomas (DIPGs)

What are the side effects of radiation treatment for DIPG?

Radiation to the brain can cause several short-term side effects such as: headaches, hair, hearing or memory loss, nausea/vomiting, seizures or difficulty speaking. Speak with your radiation oncologist about your concerns.

Will my child have long-term effects form DIPG radiation treatment?

Radiation of the brain can present long-term side effects such as memory loss and decline in neurocognitive function. Speak with your radiation oncologist about your concerns and weigh them against the benefits of radiation treatment.

Is chemotherapy an option for DIPG?

Because of the blood-brain barrier, it can be very difficult to treat DIPG with conventional methods such as chemotherapy.


Is DIPG fatal/terminal?

Unfortunately, DIPG is considered a terminal disease with a median survival range between 8-11 months.

How long can you live with DIPG? What is the survival time?

The median survival range is 8-11 months. The 2-year survival is approximately 10%, while the 5-year survival is approximately 2%.

Is there a cure for DIPG?

There is currently no cure for DIPG, however survival times have nearly doubled since the discovery of the disease.