Diffuse midline glioma (DIPG) prognosis

A prognosis is when your doctor gives you a forecast of the likely outcome of your medical condition. DIPG prognosis can be difficult to read about. So, if you need more answers or a listening ear, please contact our kind and approachable Support Team. 

Your doctor cannot be absolutely certain about what will happen to you following a diagnosis of a brain tumour. They can give you an estimate, based on your tumour type and current situation, but they may not be able to predict other factors, such as how well you might respond to treatment. This is why prognosis is often an ongoing process, revised at different stages in your journey.

Cancer Research UK have some information about the factors which may impact brain tumour survival.

Diffuse midline glioma was once called diffuse intrinsic pontine glioma. While the name has changed, the widely known acronym, DIPG, is still used when referring to this type of brain tumour. On this page we use DIPG in reference to diffuse midline glioma.

DIPG prognosis

Diffuse midline glioma is a common primary brain tumour that affects children. DIPG prognosis is sadly not promising, with average life expectancy being less than a year.

We’ll take a closer look at DIPG prognosis below:

• The average (median) overall survival for people with diffuse midline glioma (DIPG) is less than 1 year – generally ranging from 8-11 months.
• About 10% of people survive at least 2 years after diagnosis.
• About 2% of people survive at least 5 years after diagnosis.

Some people live longer, but there appears to be no common reason for this. However, research has shown some factors that seem to suggest that people with DIPG might survive longer than 2 years. These include:

• Being younger than 3 years, or older than 10 years
• Having fewer symptoms at diagnosis
• Having smaller tumours on the MRI at diagnosis, with less evidence of it spreading outside the pons area of the brain
• Having an HIST1H3B mutation/not having the H3 K27M mutation (people with the H3 K27M mutation don’t respond well to radiotherapy, and tend to relapse sooner than people with the HIST1H3B mutation).

The figures for DIPG prognosis are given in 1, 2, and 5 year intervals simply because doctors use these intervals for research and measuring. They aren’t meant to represent how long a person will live past those intervals. For example, someone who is a 5 year survivor might live as long as any other healthy person, depending on their circumstances.

It is important to remember that statistics and averages cannot tell you what will happen to you specifically.

Read more about diffuse midline glioma symptoms and treatments.

Get support

If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.

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Receiving a DIPG prognosis

Different people approach their prognosis in different ways.

• Some do not want to know at all. They are afraid of what they might hear and how it may affect them
• Some just need some time to cope with their diagnosis before asking about their prognosis
• Others may want to know from the beginning, using their prognosis to plan ahead

There is no right or wrong answer as to whether or when to receive such information. It is entirely up to you whether or when you want to speak to your doctor about your prognosis.