In Patient story

Hi! My name is Katie, I am 25 years old, I am currently living in the lovely Kent countryside just outside of Southeast London. I work in a local secondary school after graduating from my Bachelor’s Degree in Biomedical Science last summer. I am part of an amazing family with the most supportive and caring parents and grandparents, I am one of 6 siblings, and I am an aunt to four of the funniest, kindest children you’d ever meet. I am also blessed to have been with my partner Tony for 8 years and we enjoy exploring different places, trying different cuisines, and watching films together – we have done even more of this since my diagnosis.

I wanted to tell my story to firstly highlight my condition as we are roughly 3 in a million and are often underrepresented. And secondly to show any newly diagnosed colloid cyst patients that there are people out there who will support us – and those people are the brainstrust team.

 

Receiving a diagnosis during the Covid-19 pandemic

In August 2021 I received my diagnosis; an intraventricular tumour called a colloid cyst, located within the third ventricle of the brain – which is right in the middle. The cyst was found after a long string of headaches lead me to urgent care with visual disturbances, resulting in a referral for a CT scan. The scan revealed the cyst at an early stage, and thankfully no sign of hydrocephalus (cerebrospinal fluid building up around the brain due to the cyst blocking the flow) meaning that I was able to be put on Watch & Wait with yearly monitoring scans every November.

As this was during the Covid-19 pandemic, the diagnosis was delivered over the phone by my GP which was incredibly hard to deal with. The best way to describe my feelings at the time was a mixture of fear paired with an overwhelming sense of confusion. As how could this be happening to me? I had just finished my degree that I had worked hard for, I was starting a new job that I was excited for at the end of the week, and I had just turned 24 years of age a few weeks prior. It felt like such a cruel twist of fate for this to happen as my life was just coming together how I wanted.

 

Coming to terms with my diagnosis

After my diagnosis, my first thought was to join a support group to gain first hand information from other patients suffering from the same illness as myself. However, I quickly realised that this was not the right decision (for me) as I became overwhelmed and scared after reading some stories documenting patients experiences. I quickly left the group and prematurely resigned myself to the fact that my life would never be the same.

However, after taking some time to process what was happening, I was not ready to give up and decided to read as many scientific journals as I could get my hands on. Having just graduated with a Biomedical Science degree, this was a comfortable way for me to digest information without confronting the emotional side of the illness – as I just simply wasn’t ready or able to do that yet. A few months passed, I learned as much as I possibly could about the condition and felt comfortable with what to expect moving forward. I also felt able to re-join a support group on social media as they can be an amazing space for support and information sharing, but I must admit I check them less and less with each passing month as my life returns to normal and my diagnosis becomes part of my life, not my whole life.

 

Finding brainstrust

I first discovered brainstrust by seeking a charity that was working to support people with my condition, in the hopes of doing some fundraising for them in the future as I have done with multiple other charities over the years. I then began to read the brainstrust website and stumbled across a page that outlined different types of brain tumours and there my condition was in the list. Due to the rarity of my condition there is a huge lack of information surrounding it so I was surprised but also extremely pleased to be represented. Upon seeing this, I applied for a brainbox as I hoped that the resources inside would help me to cope with my diagnosis and manage any future outcomes.

brainstrust has supported me greatly. After applying for my brainbox, Molly reached out to me to introduce herself as the support specialist that covers my area and has since been a big support, answering any of my questions and helping me to fulfil my desire of raising awareness for my condition by putting me in touch with brainstrust’s own colloid cysts focus group that was focused on creating resources for colloid cyst patients both pre- and post-surgery. The focus group helped me to feel not so alone in my condition as over Zoom I could finally see some faces that were going through the same experience as me. The group also gave a positive spin to my diagnosis as helping to create resources for other patients gives a sense of purpose to the pain (both physical and emotional) that we go through.

 

What I want the world to know about life with a brain tumour

Getting a brain tumour diagnosis does change you and your outlook on life, so don’t try to be the same person as you were before but embrace your new world and the challenges that face you.  Also take some time to think about what you actually want from your life, as brain tumour or not we are all only here for a short time, and we need to make the most of it. Since my diagnosis I don’t worry about things anymore and I am always up for something new or a challenge, as why not! For example, I have always been scared of open water, but I have challenged this and have been on open boat tours to see the Maunsell Forts and sea lions off the coast of Whistable. A great experience that I would never have attempted before my diagnosis.

 

My advice for others going through a similar situation

There is no right or wrong way to deal with a diagnosis, but my advice would be to take some time to yourself before diving into the world of other people’s experiences until your initial emotions have settled down and you are ready to deal with that side of things. Spend time initially understanding what is going on for you and how you would like to deal with your own journey before seeking stories of other people’s progress – as all our journeys will be different and it is best not to scare yourself with ‘what ifs’ and comparisons to other patients.

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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