Following her prompt diagnosis with a non-malignant brain tumour in early 2017, Natasha is having to focus on the short term future, weighing up the pros and cons of brain surgery and trying to live the life she wanted before diagnosis.

At the end of February 2017 I had my first ever symptom – what I now know to be a seizure.

I was in bed at 8am, woke up, felt cramp all over my body, was unable to move and then fell unconscious for several seconds. My partner called 999 but I regained consciousness during the call, so he was referred to NHS 111, who told us to go to A&E. I was checked over at A&E and sent home as the tests all came back normal.

Understanding her symptoms

Later that week I saw my GP as a precaution, who suspected I may have had a pseudo-seizure and referred me to a neurologist. The NHS neurology appointment was arranged for May, so my parents suggested I use our family medical insurance. I arranged an appointment at Queens Square for the following week with a neurological consultant recommended by one of my parents’ friends.

I went alone as there was no obvious cause for concern at this stage. When I met the consultant he did not seem worried either. He suggested I had simply woken up with bad cramp and had a panic attack, but sent me for an EEG and MRI anyway. I was told I would probably not need to return to see him. I had the tests, was called back in for another MRI with tracer, and then was summoned to see the consultant again.

I still didn’t think anything was wrong, but mum insisted she come with me just in case. At the appointment I was shown the scan with an obvious shadowy patch on one side. It was a lot to take in but I kept calm and took everything in as facts without processing what that really meant for me and my life.

Seeing an expert

The consultant I was seeing was not an expert in my type of tumour, but, in a step which I still think was excellent, had pre-empted that I might want to see an expert in low grade gliomas and had arranged for my current consultant to see me half an hour later. He confirmed the diagnosis, prescribed Keppra and suggested I go on watch and wait.

I had a functional MRI scan and consultation 3 months later, and another 6 months later had a follow up MRI. I am currently awaiting the results. I have had 2 focal seizures in the last 6 months but each one has been less severe.

I understand that I have the option for surgery at any point, but that it is not recommended at this stage as the risks outweigh the benefits to my quality of life. For now I am OK with that as I want to feel as normal as possible for as long as possible, although I am starting to wonder about what my options are and how each one could impact my life longer term.

Looking forward

I try not to think about the long term as I easily find myself getting bogged down with ‘what ifs’ which can feel overbearing. I stay clear of any information on prognosis.

Instead, I am trying to live in the now and take advantage of the relatively good quality of life I have. I still have the same dreams – a successful career, children, to make a difference and see the world – but I know in the back of my mind that when I reach each stage of life, achieving these things is likely to be more complicated.

Just before diagnosis I mentioned to a close friend that I felt I could see where my life was headed and that was reassuring, but I’ve lost that sense of certainty now.

I have plans to travel for 3 months next year with my partner, which is something I have wanted to do for a while. My diagnosis means I have new things to consider, like medication, insurance, the activities we chose to do and the pace at which we do them, but it feels like if I let my tumour get in the way of doing what I want now then I might as well give up.

Talking to love

The impact of my diagnosis on my relationships is complex and more difficult to capture in words. Telling people about my diagnosis was and still is a big hurdle to overcome.

I dread the questions ‘how are you?’ or ‘what’s news?’ as saying ‘fine’ feels like lying but the truth is way too heavy to explain in some situations. I feel like it would be easier if I had something like diabetes or even regular epilepsy.

The phrase ‘brain tumour’ comes loaded with preconceptions and it feels awkward for me to explain all the nuances involved in having a low grade form. I have now told most of my friends, but I don’t always fee

l as comfortable sharing as I would like to. This is despite the fact I have only experienced positive things when I do talk to people about it.

I am slowly learning to open up more, to let people who care for me share in my difficulties, and to ask for help when I need it.

Natasha’s story features in our recently published report: The story behind the data – non-malignant brain tumours (NMBTs). By sharing her story, Natasha has helped us to shed light on the lack of public understanding of the impact that these tumours have, and the need for better, more appropriately stratified support for those with a non-malignant brain tumour.

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