Lucy’s Story

Five years ago I was diagnosed with a Glioblastoma Multiforme; a type of brain tumour that is uncommon among young people.  Being told at the age of 19 that my tumour is incurable and that I should start thinking about fundraising for cancer charities is not exactly how I planned for my life to be. Although things have turned out this way, I still feel grateful that I have lived four relatively happy years in remission and I am incredibly proud to say that I have achieved a lot in those years despite the odds being stacked against me.

Unfortunately though, the tumour has decided to rear it’s ugly head for a second time. Once again, my life has been turned upside down and I have lost a lot of my independence. I am no longer allowed to drive and I have lost the job I had in a school that I was working at.

Taking back some control

It is difficult to describe how life is at the moment. In some respects life is just as normal as ever. I do voluntary work, I see my friends, I exercise and do generally normal things a 24 year old would do. The problem is that a lot of what I think, feel and do is centred around anxiety and fears about what is going to happen to me and the people I care about the most. Having gone four years in remission, I started to feel that almost invincible feeling that I believe most young people experience to differing extents. It is that carefree belief that by being young and strong you can overcome any obstacle thrown at you. In my head, I knew that my cancer was likely to come back, but I never actually believed it would. I think that having that belief has actually spurred me on throughout the years and allowed me to live life in the most positive way I can. And, at the moment, I am making my life as busy as possible, ensuring that I am doing lots of activities as a distraction before my upcoming scan.

I think that having cancer only makes me more determined to do things, especially things that people don’t expect you to do because you’re ill. When people talk about fighting cancer, I tend to think that that there is a bit of a suggestion that you have some control in beating the illness. I believe that it can do no harm to put your body in the best position to fight it. But I really think that ‘fighting cancer’ is basically not allowing it to take over your life and stop you from doing the things that you want to do.

The anxiety

My over-thinking brain does not always make getting on with things so easy. I tend to over-analyse things to the nth degree. I am the type of person who could spend hours thinking and mulling things over. This is quite a frustrating habit to deal with because I feel like it can stop you from living life spontaneously.

At present I am undergoing intensive treatment for my brain tumour. I’ve just had my third cycle of chemotherapy. People often ask me how the chemotherapy is affecting me. I think they expect me to tell them how awful and run-down I am feeling but in all honesty I don’t feel any different after taking them. The only thing I suffer from is a little bit of fatigue and it’s not enough to stop me from going out for a little run.

What I do find hard is not knowing what the chemo is doing and whether it is working. It is so difficult to accept that I’m not going to know what’s going on in my brain until the scan. If I get a headache or my vision seems a bit fuzzy it sets my imagination racing. I think to myself that the treatment must not be working and my tumour is growing. To deal with this on a day-to-day basis is so hard.

Fighting Fit

I genuinely feel really healthy and fit most of the time. If I’m being perfectly blunt about it, I am probably more fit and healthy than the majority of the population. I run about 3-4 times a week and enjoy a variety of sports. Part of why I do what I do is because I absolutely adore sport and get so much out of it. The other reason is that it really does help me stay sane. When I play tennis or netball I am so focused on what’s going on, thoughts about my problems tend to stay at the back of my mind until I’ve finished. Being able to do lots of exercise and still play sports is something not everyone would be able to do in my situation. Lots of people I have met with brain tumours can be quite physically incapacitated as a result of the way a tumour affected their bodies. I can’t imagine how hard that must be to not be able to do the things you were physically capable of doing before, and I feel forever grateful that I have not been affected in that way.

The support

My family have been wonderful in supporting me  to get to where I am today. I don’t like to sound cheesy but I really don’t think I would have coped so well if they hadn’t been there with me every step of the way. A lot of good things have happened from being ill as well as bad. I do remember saying when I was initially diagnosed that I would no longer be able to do all the things I wanted to do. To some extent that is true, but I also found that there were some things I never ever expected that I could do – but I did.

Lucy writes a blog about her experiences of living with a brain tumour. Click here to read.

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