Brain Tumour Ireland Launches Heads Up Campaign Highlighting Brain Tumour Symptoms in Children & Teenagers

Marking National Brain Tumour Awareness Week from October 20-26, Brain Tumour Ireland has developed a guide for members of the public on identifying brain tumour symptoms in children and teenagers. The guide is being published to coincide with a webinar, “Heads Up: supporting children with a brain tumour” taking place on Monday October 20 from 6-7.30pm.

The online event for parents on supporting children with a brain tumour will feature contributions from psychotherapist and author, Dr Joanna Fortune, on talking to a newly diagnosed child and their siblings, and Avril Carey, principal of the Beaumont Hospital School, on navigating going back to school following treatment. To register for the event, or to download the Heads Up guide, visit www.braintumourireland.com

For Dr Joanna Fortune, play is an important part of supporting children through a very tough time:
“Difficult conversations are difficult to have. With this webinar I aim to share practical, even playful, tips to support parents, not only through these conversations, but through this very challenging journey with their children. Talking to a child about a brain tumour is one of the most sensitive conversations to have. It needs to be honest, yet gentle and reassuring. The words parents use will depend on a child’s age and capacity to understand. However, regardless of age, it’s important to avoid jargon, and to use clear and simple words. A parent can acknowledge that things are serious, and will be hard, but to focus on hope and efforts to get through it.

“Parents should encourage questions from their child, meaning that they can largely lead and guide the conversation. It also lets you know where they’re at. The feelings that they express, from confusion and fear, to sadness and anger, should be welcomed and validated. And, remember, that play is the language of children. It is how they process information and make meaning of their life experiences, and is a great tool for parents in negotiating these situations.”

With the new Heads Up campaign, Dr Jane Pears, Consultant Paediatric Oncologist, CHI Crumlin, is urging GPs, doctors, and A&E staff, to consider brain tumours when reviewing symptoms:
“As the National Children’s Cancer Centre, at CHI Crumlin we see all cancer diagnoses for children under the age of 16 years in the Republic of Ireland, with around 220 new patients a year. Unfortunately, there’s a recurring theme in brain tumour diagnosis where patients would have gone with something wrong a few times to their GP or to A&E, but getting to a diagnosis can take some time and have consequences such as loss of sight. It’s important to emphasise that it doesn’t necessarily mean that the outcome is worse for those who have a longer timeframe to diagnosis, but that it can be, and a person may have, unfortunately, lost vital functions by the time the diagnosis is made.

“With this new Heads Up campaign, the aim is to reduce the time from symptoms becoming apparent to diagnosis. We want to remind GPs, doctors and A&E staff, that children can get brain tumours and, while it is rare, it is the most common solid tumour in oncology in children. I would encourage people to get to know the range of symptoms, which can include the fontanelle being tense and elevated, rather than soft and flat, in babies, or it could be early puberty in young children, or it might be a change in handwriting or educational ability for older kids. It’s also worth parents considering asking the question of a doctor “can you reassure me that this isn’t a brain tumour?””

Series of Events
National Brain Tumour Awareness Week will see a number of events taking place including: the organisation of an eight-week music therapy programme for teenagers to enable them to express their emotions through music and alleviate stress and anxiety; a series of nightly children’s bedtime stories presented by paediatric doctors; and an information meeting on the Brain Restore rehabilitation design project for young people with a brain tumour.

The Brain Restore event at the RCSI, Stephen’s Green in Dublin, on Tuesday October 21 at 6pm, will be hosted by author, broadcaster and comedian Colm O’Regan. It offers an opportunity for young people to enhance theirs and others’ health and well-being by shaping future rehabilitation efforts that are informed by their own real-life experiences. For full details on all of the events taking place as part of the week, visit www.braintumourireland.com

Five Things to Know About Brain Tumours in Children & Teenagers

What is a brain tumour? A tumour is an abnormal group of cells forming a lump, that can be benign or cancerous. This is confirmed by removing a piece of the tumour by way of biopsy and examining it in a laboratory. The name given to a tumour depends on the exact type of cell that grew out of control initially. The treatment and care of a young person with a brain tumour involves a large team of specialists including neurosurgeons, medical oncologists, radiation oncologists, specialist nurses, psychologists and allied health therapy professionals.

How common are brain tumours in young people? Latest figures from the National Cancer Registry (2020-2022) show that there are approximately 65 children and young people diagnosed with a brain or other central nervous system (CNS) tumour each year in Ireland. In the period 2011-2020, brain and CNS tumours were the most common childhood cancer (0-15 years), accounting for 27 per cent of cancers, alongside leukaemia (also 27 per cent).

What causes a brain tumour? The cause of a childhood brain tumour is unknown in the majority of cases. There are a small number of children who have a genetic predisposition to developing a tumour, having conditions such as neurofibromatosis, tuberous sclerosis or Li-Fraumeni syndrome.

What are the possible symptoms of a brain tumour in children and teenagers? The first signs of a brain tumour depend on many factors including the precise location of the tumour, the structures the tumour is putting pressure on, and the age of the child. Symptoms include persistent vomiting, recurring headache, problems with balance and co-ordination, behaviour change, fits or seizures, abnormal eye movements, blurred or double vision/loss of vision, and a wry or stiff neck/head tilt. In babies, there may be increasing head circumference, while other children may experience early, delayed or arrested puberty.

How are tumours treated? Each patient is unique and so even the same type of tumour can affect young people in different ways. Therefore, each child’s treatment plan is unique to them but based on the “standard of care” that maximises chances of cure and minimises chances of long-term effects. Treatment may involve surgery, radiotherapy, chemotherapy, molecular targeted therapy or a combination of all of these. In general, children need to recover from surgery before starting any other therapy.

Brain Tumour Ireland is grateful for the support of The Brain Tumour Charity in the UK in developing the Heads Up booklet.

If you have questions about brain tumours, or want to find out more about the work of Brain Tumour Ireland, telephone 085 7219000 (Monday to Thursday, 9am to 5pm). Follow on social media: Facebook @braintumourireland; Instagram @brain_tumour_ireland; and X @braintumourirl

ENDS

Image credit: Photo by David Matos on Unsplash