FAQ's
This FAQ section is designed to help families who have just received a DIPG diagnosis. It's written by our charity and reviewed by DIPG parents who understand the overwhelming emotions you're facing.
Important Note: The information here is intended to improve your general understanding and should not be taken as medical advice.
Our aim is to provide some of the questions you might have in those initial, frightening moments, based on the hindsight of others who have walked this path. It's natural to want to learn everything you can. We encourage you to research and ask questions – everyone does! However, with so much information available, it can be hard to know what is reliable.
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Be Wary of Unverified Information
While you may encounter personal experiences (anecdotal evidence) online, please approach them with caution. Always discuss any alternative approaches thoroughly with your oncologist.
We hope this FAQ empowers you to ask informed questions and feel more prepared for your journey.
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What are the signs and symptoms of DIPG?The signs of a DIPG vary as the pons and surrounding structures (where DIPGs are located) are responsible for a variety of different body functions. Nearly all will be emergency presentations. A child with a DIPG may display: Abnormal alignment of the eyes or/and double vision (diplopia). Weakness of facial muscles or facial asymmetry (one side of the face appearing different from the other). Arm and leg weakness. Unstable balance and co-ordination. Difficulties walking and speaking. Difficulty swallowing/unusual drooling. General tiredness. Changes in normal 'mood', unusually emotional. Read more
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What is the prognosis for DIPGs?Unfortunately, there is NO cure for DIPG at present.
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What are the standard treatments for DIPGThe standard treatment is radiation therapy (considered palliative radiotherapy) given over 3-6 weeks to help manage symptoms, though it is not curative. Surgery to remove the tumour is generally not an option due to the location in critical areas of the brain stem. Steroids like dexamethasone may be given during radiation to reduce swelling and pressure, though they have unpleasant side effects. If hydrocephalus (fluid buildup in the brain) occurs, it can be treated with a shunt to drain the excess fluid or an endoscopic third ventriculostomy procedure. Chemotherapy drugs alone have not been shown effective, though new delivery methods bypassing the blood-brain barrier are being explored in clinical trials. Clinical trials represent one of the few treatment options available, especially for newly diagnosed patients in the UK. These are currently extremely limited. Those who have access to biopsy and tumour profiling may be able to discuss ‘targeted’ options with their oncologist. More clinical trials and self-pay options may be available overseas but have strict eligibility criteria. Read more
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ProgressionAlthough 75-85% of patients experience some symptomatic improvement after radiation therapy, DIPGs almost invariably recur or progress within 6 months from therapy according to published data. Once the tumour begins growing again, it typically does so rapidly, affecting critical brain regions. Any further treatment is generally supportive and aimed at relieving symptoms. Sadly, following tumour progression, the median survival time is alarmingly short, ranging from just 1 to 4.5 months based on reported clinical trials. While the average survival statistics are dire, it's important to remember that every child's journey is different. If your child has been diagnosed with a DIPG, focusing on their wellbeing and quality of life is by far the most important thing.
