Spinal and brain tumours in children

Brain and spinal tumours (otherwise known as Central Nervous System or CNS tumours) arise from different types of cells in the brain and are classified according to the cell type and area of the CNS in which they began. Most CNS tumours start in glial cells – the supporting cells of the brain. These tumours are known as gliomas and include astrocytomas, ependymomas and oligodendrogliomas.

Another group of tumours arise from embryonal cells. These tumours include medulloblastoma and PNET (primitive neuro-ectodermal tumour). Altogether there are more than 100 different types of brain tumour, most of which are very rare.

Tumours classified as low grade (benign) are very slow growing and remain in the part of the brain in which they started. High grade (malignant) brain tumours are likely to be more aggressive and to spread into the brain tissue which surrounds them. This can cause pressure and damage to the surrounding areas. For example, astrocytomas are themselves divided further into four grades:

• Grade 1: pilocytic astrocytoma;
• Grade 2: diffuse or low grade astrocytoma;
• Grade 3: anaplastic astrocytoma; and
• Grade 4: glioblastoma.

Incidence

Over 400 children a year are diagnosed with brain, CNS or intracranial tumours in Great Britain (1). They are the second most common group of cancers and the most common group of solid tumours that occur in this age group, accounting for more than a quarter (26%) of all childhood cancers in Great Britain (1).

Spinal & Brain Tumour Child Survival Rate

The average 5-year spinal and brain tumour child survival rate is 74% in England (2), but this figure varies widely between tumour subgroups.

In teenagers and young adults (those between 15 and 24 years old) the average 5-year survival rate of brain, other central nervous system (CNS) and intracranial tumours in the UK is 79.9% for young men and 82.5% for young women (3), but these figures vary widely between tumour subgroups.

Astrocytomas account for around 43% of children’s brain, CNS or intracranial tumours in Great Britain1 and have an average 5-year survival rate of 81% in England (2).

Childhood ependymomas and choroid plexus tumours have an average survival rate of 76% in England, and childhood medulloblastomas tumours have an average survival rate of 63% in England (2).

Diffuse Intrinsic Pontine Glioma (DIPG) is considered to be incurable. Sadly, most children die within months of diagnosis and fewer than 10% live longer than two years (4,5)

Brain, CNS and intracranial tumours are the greatest cancer-related cause of death in children in the UK, causing around 35% of cancer deaths (over 85 children per year) (6). When Rhiley was two years old she was diagnosed with a rare tumour called ATRT that started in her spine and spread to her brain. Read her ATRT cancer story to learn more.

Olivia was diagnosed with a brain tumour at the age of nine. After years of treatment, she sadly passed away. Learn more about Olivia’s story – How I found out my child had a brain tumour.

Brain tumour treatment will vary according to the precise type of tumour, its grade, position and the extent to which it may have spread. Doctors will carry out a range of tests in order to obtain this information, including taking a biopsy and the use of a CT or MRI scan.

The main treatment for most brain tumours in children is surgery (if feasible). If a tumour cannot be completely removed surgically, or if there is a chance that some cancer cells have been left behind, radiotherapy may be given afterwards. Radiotherapy may also be used as the main treatment if surgery is not possible, however it is usually avoided in children under the age of three years, as there is a greater risk of harm to the developing brain.

Chemotherapy is used routinely to treat medulloblastoma and is increasingly being used to treat other types of brain tumours. It may also be used in situations where the tumour cannot be removed completely with surgery.

The child may be given steroids. These do not treat the tumour but can improve symptoms by reducing the swelling that often surrounds brain tumours. Anti-convulsants may also be given to prevent fits.

Other possible treatments may be considered such as proton beam therapy (a form of radiotherapy). Higher doses of chemotherapy which kill the bone marrow cells as well can be given but with stem cell rescue (stem cells are collected prior to the treatment and given afterwards).

Read Dylan’s battle against brain and spinal tumours, told by his mum, Jessica:

Dylan’s symptoms started in early April 2014 with a random vomit at nursery. A few days later he threw up again. No warning, no other symptoms and he hadn’t over-indulged or been particularly energetic. He proceeded to deteriorate over the coming weeks.

What threw us was that he only complained once or twice a day for 5-10 minutes and then he was absolutely fine again. Then the frequency and severity of these episodes increased, I contacted the doctor and was seen straight away.

We were transferred to the hospital where he appeared to be the healthiest child in A&E. They ran countless tests and they all came back negative. The following day they broached the subject of discharging him and seeing him as an outpatient, something we refused. An MRI scan was arranged to rule out anything sinister.

At around 6.30pm on a Friday in early May, we were told the results were in. What followed was the worst conversation of my life. The doctor said the results showed brain and spinal tumours. One was the size of a golf ball in our little boy’s cerebellum.

Dylan needed surgery. Surgery that was so dangerous that he may not survive it. If he did survive he may be left with permanent disabilities, unable to breathe, talk, think. Fortunately, the surgery was a total success with the brain and spinal tumours being removed, Dylan was back on his feet in no time.

Then chemotherapy started. Dylan would be treated every other week for the next 30 weeks. Dylan’s hair fell out almost overnight and soon after he lost his first Hickman line to an infection. Dylan’s protocol ended on Christmas Eve 2014 but unfortunately, in February a scan showed that the cancer had regrown and spread at an alarming rate. He needed another year of chemotherapy and finished the treatment around the 12 May 2016.

Dylan is now five years old and is doing really well, he is happy and has started school. He is currently in the same school as his older brother. They’ve been great and has supported Dylan with his education. We try to keep him busy by going to a martial arts class to help with his balance and he’s is healthy considering his complications.

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