Dealing with a childhood brain tumour as a family

‘A role model in terms of not being defined by her diagnosis’

Looking back on the 11 years since their daughter Poppy was diagnosed with a brain tumour, brainstrust volunteer Pippa Simpson catches up with Chris and Rachel about their brain tumour journey.

For information about our support for children and families, visit our little brainstrust website.

In July 2010 Poppy’s parents, Chris and Rachel, received the devastating news that their 4 year old daughter had a brain tumour located around her brain stem.

Symptoms

Poppy began presenting worrying levels of clumsiness at the age of 3. Her pre-school teacher had concerns about what was causing this and suggested to her parents, Chris and Rachel that they take her to the GP. Poppy was turned away several times even after, as her dad described “Poppy was walking like a drunk person, we thought she was messing about” she even walked into the wall in the doctor’s office and her family were still told “she’s fine, she’s just clumsy”.

Chris and Rachel’s anxiety and concerns grew. They decided to get a second opinion on her case. It was then that they were told Poppy had a blockage causing pressure behind her eyes and the cause was unknown and worrying.
She was ambulanced straight to hospital where she was sent for an MRI scan. Due to her age Poppy had to undergo general anaesthetic for the scan. This is a common cause of additional distress on both paediatric patients and their parents when going through both diagnosis and treatment.

“We didn’t know anything about brain tumours at the time, we had no knowledge.”

Diagnosis and results

The day of the results was a nerve-wracking and worrying time for both Chris and Rachel who unfortunately received the news that Poppy had a brain tumour rather bluntly and with lack of compassion.

“It was brutal, it very almost seemed like they took great joy in giving bad news because they didn’t have to do it often”.

Treatment

Poppy was sent straight into surgery to insert a drain to treat hydrocephalus – a condition seen in younger children in which fluid accumulates in the brain, building pressure.

After several delays and being nil by mouth for many hours Poppy endured her second neurosurgery to perform an ETV procedure – a minimally invasive procedure creating an opening in an area of the brain, allowing Cerebrospinal fluid (CSF) trapped to escape into its normal pathway.

After the ETV had been removed Chris and Rachel were told to make sure their daughter didn’t move otherwise her ‘brain might collapse’. Leaving them with a serious responsibility yet with little information and support from their team.

Over a week later, the family were put on ‘active surveillance’ for 3 months. In October 2010 Poppy had her first MRI scan since surgery and received the brilliant news that there had been no change to the tumour. She continued to have regular scans.

brainstrust support

Rachel and Chris felt a lack of confidence within their team. In 2014 Rachel contacted brainstrust who put them in contact with paediatric neurosurgeon Conor Mallucci based in Alder Hey, whose field is to improve the outcomes of children with brain tumours and hydrocephalus.

Treatment with a new clinical team

Their experience as a family was completely different under the care of Mallucci: “No matter what he’s telling you you feel at ease”. The MRI scan was less traumatic for Poppy as the Alder Hey team were empathetic and really cared for her throughout. They felt they had wrap-around care with both the Alder Hey team and brainstrust supporting the family.

“brainstrust have always stuck with us”

In 2019 Poppy had another ETV procedure and was told to come back for a scan in 2 years. When the COVID-19 pandemic hit, the call for Poppy’s results was delayed by 3 weeks .

The results were immediate and the family was told that there had been slight changes to the tumour however this may be attributed to her growth over the last 3 years.

They said it was: “The worst 10 minutes of my life waiting for this phone to ring”.

Present day

Results showed that the brain mass had in fact shrunk and the family were told it may not have been a brain tumour after all but hamartoma – a disorganised piece of brain that’s blocked the fluid canal resulting in Hydrocephalus.

Poppy is now in remission and will have her final MRI in 1 year if necessary and then be transferred to adult oncology if she wants. Her maturity and outlook on the experience is inspiring and refreshing to hear. She’s a role model in terms of not being defined by her diagnosis.

“You don’t have to tell people about your brain tumour diagnosis if you don’t want to be defined by it or don’t feel like it’s necessary. I think people that haven’t been through something like that tend to joke about it which is why I don’t tell people. I moved school, made new friends and just told the people I’m closest to. Some people don’t know about it to this day”.

Poppy’s story has been captured and written by brainstrust volunteer Pippa Simpson, who endured her own personal diagnosis with a rare APXA brain tumour in 2019.

Now having been brain tumour free for 2 years she has taken time to collaborate with brainstrust and is currently working with the charity to create support resources for Teenage and Young Adults (TYA) going through their own diagnoses. These include a page on the official brainstrust website including ‘Top Tips’ for TYAs to understand and know about what challenges they may face, and a radiotherapy information book aimed at TYA patients.

Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php