In Fundraising News

 ‘I may have a disability, but I don’t have an inability to achieve my dreams’

What does it take to complete a marathon? Determination, dedication and perseverance. A background in running, perhaps? Not necessarily.

We recently heard from Leighton who has just signed up to take on next year’s Brighton Marathon in support of brainstrust. Leighton has been battling a Ganglioglioma brain tumour for over a decade now, as he shares below:

At the age of 9 I started experiencing these burning pains in my chest. Later, I started to experience black outs after these burning pains, and deja vu (which we later found was an aura which lets you know that you’re about to go into a seizure). So, I went to the doctors and they did tests. I got diagnosed with epilepsy, complex partial seizures (the peak of my seizures back then was 8 a day). They did further tests, and from my MRI they found I had a Ganglioglioma brain tumour, a benign tumour in my front right temporal lobe.

When I was 10, at the end of Year 6, I went under the knife to remove the tumour. After that op I had the Summer to heal and I was straight back into the deep end by going to secondary school with no support. Later, having another scan, they found there was more of the tumour. So, a year and a bit from my first operation, I went under the knife again to find that my front right temporal lobe was diseased. That infected part of my brain and the tumour was to be removed.

I had my scans after this op to find that there was a little bit of ‘scar tissue’ and all sounded promising. But, as you’ve probably gathered, that wasn’t scar tissue. Yep, it was my tumour and it just kept growing.

Having the amazing support from my mum, a specialised school and different charities, I became the confident guy I am now. But going to 2017, my seizures hit an all time low by having tonic-clonic seizures and it really didn’t look good. So, a couple of weeks later I was in for my third operation. They didn’t remove all of it as it is too close to a blood vessel.

Within my life I have had three brain surgeries to try and remove my tumour. Right now there are talks of a fourth operation, but I’m really tired at this point. I’d rather focus my energy on my dream, as that is to be a stand up comedian.

On his journey to achieving his dream, Leighton also wants to conquer his next challenge – running the Brighton Marathon in April 2021. When we asked Leighton to share his running experience. He replied:

“My running background is pretty nonexistent. Truth be told I started running this morning!”

Although Leighton hasn’t quite yet broken in his running shoes, he knows he has what it takes to conquer a challenge some people wouldn’t even dream of.

In 2018, Leighton traveled to Tanzania to trek Mount Kilimanjaro – the highest mountain in Africa, and the highest single free-standing mountain in the world.

Kilimanjaro – This was a year after my third op. My seizures were controlled by medicine and things were great. So I signed up unbeknownst to my mum, hehe, and at the time I was gonna go with my English tutor but he pulled out due to personal reasons. So I was put amongst 3 random strangers. We were raising money for a local primary school.

I didn’t train as much as I should have, but later learning that wasn’t my main concern – going up I got altitude sickness, but I was well enough to push on. Due to being and feeling sick, I lost nutrients and wasn’t able to eat the right amount as required. I was heavily fatigued before the major push up to the top. But, I persevered even though it was mentally tough and it was one of the most rewarding feelings ever as you’re at the highest point in Africa. I can’t describe how beautiful it was walking above the clouds and sleeping under the stars. Learning a different culture and seeing how easy I have it… it puts things in perspective. If I had the opportunity to do it again, I would!

Leighton filmed his adventure, so you too can experience his emotional and triumphant journey. Filmed in two parts, simply click the YouTube links below to start watching:
You can also listen to a podcast Leighton is featured on, here: https://youtu.be/07yWQkocVt0
Running alone is a completely new experience for Leighton, never mind running over 26 miles! His inspirational journey continues, and we have no doubt that he’ll be just as proud of himself crossing that finish line, as he was when he completed Mount Kilimanjaro. We’re thrilled to have Leighton on board team brainstrust, and we’ll be joining the crowds cheering him on all the way! P.S. If you’d like to share your training hints and tips with Leighton – he’d love a running buddy to help him along the way! Please get in touch with our Community Fundraiser, Sophie 
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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