Meg’s Story

A week before her 19th birthday, on July 22nd, 2004, Meg was admitted to A&E having lost consciousness at work. When she came round, she had no recollection of what had happened to her, nor what she had been doing for the previous few days. Work colleagues who were with her at the time described her symptoms and it sounded very much like she had had a seizure. She was always the reliable child – ask Meg to post a letter and you knew it would be posted. Not any more.

A week before her 19th birthday, on July 22nd, 2004, Meg was admitted to A and E having lost consciousness at work. When she came round, she had no recollection of what had happened to her, nor what she had been doing for the previous few days. Work colleagues who were with her at the time described her symptoms and it sounded very much like she had had some form of seizure. Suddenly, all those little ‘odd’ things that had happened to her over the previous twelve months took on a new significance – the inexplicable car crash that we put down to mechanical failure, the ‘flashy eye’ that we thought was maybe migraine, the early morning nausea that she had had for several months when she was 15, the forgetfulness that was just so not Meg. She was always the reliable child – ask Meg to post a letter and you knew it would be posted. Not any more.

It transpired that this also was not the first seizure Meg had had – she had a couple of others when travelling abroad in her gap year, but didn’t think anything of it. Meg just thought that this is what happened to Meg – it was normal and that maybe eating more chocolate would solve the problem.

Not to worry – people often have a single seizure and that’s the end to it. But this was more than one seizure. So an MRI scan was booked for the end of August, and another one in October . . . and in February. The August scan told us that there was an abnormality in Meg’s brain; this confirmed what her older brother had been saying for years! The October one told us more – that she has a brain tumour, that it is in ‘tiger country’ and that the ‘enhancement’ of the tumour was cause for concern. What did this mean? It means that, of the various types of primary malignant tumours, Meg’s tumour was low grade. Each type is graded on a scale 1-4. Grade 1 and 2 tumours are said to be ‘low grade’ and grade 3 and 4 ‘high grade’.

The first priority was to get some sort of stability back into Meg’s life and to sort out some medication to control her seizures – the symptoms. Finding medication that suits her took the best part of two years and we aren’t quite there yet. The first medication she was on put her back in hospital as it caused toxicity. She was due to begin a new life at Warwick University and she wasn’t going to let the small issue of a brain tumour put a halt to this. So her first year became a year of trial and error; learning to live with her symptoms and establishing herself at Uni, whilst at the same time finding that her independence was gradually being eroded as she couldn’t lead the life she had been used to. Not once has Meg railed against this situation. Yes, there have been the panicked phone calls when maybe she has seen misleading things on the web that she shouldn’t have seen, or when she has taken too much/too little medication because of her difficulties with memory, or when she has felt really poorly so we have gone to fetch her. But we’ve had it easy. We’ve been so humbled by the courage of this gorgeous young lady, who never thinks of herself, only about the impact that this is having on those around her.

Meg's brain scan

Dealing with the cause was going to be much trickier. If the tumour had been anywhere else in her brain it would have been removed immediately. It’s a long story and one we’ll save for another page, but via couriering her scans to Rabbi Firer at the Ezra Le’marpeh Centre in Israel, who then sent them to the US, we found a solution. Meg completed her history of art degree (the lengths she went to to miss her last two exams!) and flew to the Brigham and Women’s Hospital where Professor Black successfully removed her tumour using intra-operative MRI scanning.

It was a long day – read Meg’s Boston Blog to find out what happened

And so our journey is almost over. I say almost. Two years on (almost to the day!) Meg’s latest scans show a healthy brain. She came back two weeks after her surgery, embarked on an MA the same autumn, which she successfully completed a year later. She has just married to Josh and has also been diagnosed with neurofibromatosis 1. So our journey is not over yet. We can’t see the end; we don’t know how many twists and turns there will be on the way, but we do know that this has been a huge learning experience for us and that we are growing in strength as we travel together. We also know that it has a happy ending.

With brainstrust, you are never alone. Click here to get in touch with one of our trained volunteers who has been through the same experiences you are going through.

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