The life changing impact of a non-malignant brain tumour

Claire was diagnosed with a grapefruit-sized meningioma. Her story is a pertinent example of the life-changing impact of a non-malignant brain tumour, and the resilience shown by those that receive the diagnosis.

There had to be some explanation for my constant migraines, hands that trembled and an increasing everyday struggle to find words. I constantly forgot things like work assignments, and I would faint flat out on the floor at random times of the day and in public places. I would suddenly be completely blind for a few moments, as though my eyes were tight shut when in fact they were wide open. My symptoms were dramatic, and they were taking their toll. I was scared and depressed.

‘I knew something was wrong’

My GP put it down to stress but I knew something was wrong and went to an optician, as the moments of blindness were getting worse. They immediately said there was severe pressure behind my eyes and sent me straight to hospital. I was given scans and then referred to Atkinson Morley’s Neurology Dept – a brain tumour, the size of a grapefruit, had showed up on the scan. The consultant booked me in for an urgent operation to remove an intraventricular meningioma, two days later.

It was incredible that overnight I had gone from being an independent woman living life at full tilt to someone who was very ill and depending on others.

I had lost my speech, couldn’t find even the most straightforward words, I was partially blind, very weak on one side, and often didn’t even know where I was. And even with the tumour removed; I was going to have to take seizure medication for life due to internal scarring from the operation. And with all that, there was also the constant overwhelming feeling of fatigue and getting confused easily.

I had been tired before, but this was like nothing I had ever felt. This was turbocharged tiredness. It was like trying to walk through treacle, my arms and legs felt heavy and even just getting up from a chair felt like a major effort.

I now have hyperacusis and tinnitus, spasms in my legs and neck and terrible anxiety. I need to take things at my own pace now.

Looking to the future

My dreams to be a successful business woman in London with a 9–6 job are no longer possible. I can’t be relied on to do my job well. It is sad, but it is true. But that has not stopped me finding other ways to achieve my goals. Yes, I can’t earn the money I once did but, I have now have my own projects that I can do in my own time.

I have lost some friends because we have lost touch, as our lives do not cross paths like they used to but I have found new friends within the brain tumour community. Since my diagnosis I have written a book, and have a second one coming out at the end of this year. I did a book tour around the UK and visited many charities to share my story with other brain tumour patients. I set up and presented a volunteer radio show for nearly 4yrs that was very successful. I didn’t do it alone but I did do it.

Even with my fumbling words and memory loss I find my way. I still need support and medication, counselling and have attended several clinics in hospitals for issues I still suffer from. But, I don’t say still for long. I cry when I find it too much and then I pick myself up and carry on.

Claire’s story features in our recently published report: The story behind the data – non-malignant brain tumours (NMBTs). By sharing her story, Claire 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