Diffuse midline glioma (DIPG)

What is a DIPG, or diffuse midline glioma?

Diffuse midline gliomas are grade 4 brain tumours that, until recently, were called diffuse intrinsic pontine gliomas (DIPGs). They’re more common in children, but they can occur in adults. They’re:

• fast growing
• likely to spread
• sometimes referred to as malignant or cancerous
• difficult to remove surgically because they are diffuse, which means they don’t have well-defined borders
• a type of glioma, which is a brain tumour that grows from a glial cell.

Diffuse midline gliomas (previously called DIPG brain tumours) grow in the areas of the brain that are found in the midline, this is the natural centre line of the brain between its two halves. They most commonly grow in the pons in region of the brain stem, the thalamus and the spinal cord.

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DIPG symptoms

DIPG symptoms can vary. This is because the areas where they usually develop are responsible for a range of different body functions.

The most common DIPG symptoms your child may experience include:

• problems with walking, coordination or balance
• weakness in the arms and legs
  
• difficulty controlling facial expressions or one side of the face appearing different from the other
• speech difficulties
• problems with swallowing and chewing
• double vision or difficulty controlling eye movement.

Growth of the tumour might also block the drainage of the cerebrospinal fluid that surrounds and nourishes the brain. This can cause a build-up of pressure in the head, known as hydrocephalus, and can cause:

• headaches (especially in the morning)
• nausea
• fatigue.

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Join our community on Facebook

Our closed Facebook group for parents is a great place to connect with other parents affected by a brain tumour and share your experiences.

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What causes DIPG, or diffuse midline glioma?

The cause of brain tumours, including diffuse midline gliomas, is not yet known. This can be one of the most difficult things to accept as a parent as it can leave you feeling helpless.

Brain tumours are nobody’s fault though. There is no research that shows that anything you may have done during pregnancy or in your child’s early infancy could have caused your child’s brain tumour.

At the moment, there’s ongoing research into diffuse midline gliomas, including discovering its causes, which could help develop new treatments in the future.

DIPG treatment

Radiotherapy is the current standard of treatment for children with a diffuse midline glioma (previously known as DIPG). Steroids may also be used to help reduce some of the pressure caused by the tumour and radiation treatment.

Unfortunately, surgery to remove the tumour is usually not possible because of:

• the difficulty of removing a diffuse tumour without damaging surrounding healthy tissue
• the dangers of operating on areas of the brain that control things such as breathing and heart rate.

Chemotherapy drugs that are used to treat high grade gliomas in other parts of the brain and in adults, have unfortunately not been effective in treating childhood diffuse midline gliomas.

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How long can somebody live with a DIPG?

This will be different for everybody who is diagnosed with a diffuse midline glioma (formerly known as diffuse intrinsic pontine glioma, or DIPG). It depends on many factors, including the specific details about the tumour, how they react to treatment and their general health.

However, we do have some statistics on life expectancy in our DIPG prognosis page, linked below.

Diffuse midline glioma prognosis

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