Supporting each other with our meningioma diagnoses

Meet Janice and Elly – ‘brain tumour twins’

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Janice and Elly have a connection like no other. Their friendship began when they met at Buckingham Palace over ten years ago. At the time, Janice and Elly both worked for the Royal Family, and it wasn’t long before they became firm friends. Their bond quickly grew when they moved in together as roommates, sharing a house in London. Reflecting on that time, Janice said:

“Ever since we lived together we have had a running joke about our ‘agile minds’ – a reference to our ability to make tenuous connections between subjects and leap from one topic of conversation to the next. Little did we know just how ‘agile’ our brains would become!”

An unexpected diagnosis

One ordinary day, Elly attended a routine eye exam. She had experienced some swelling in her eye, but presumed her contact lens had caused some irritation. Sadly, Elly was soon diagnosed with a non-malignant meningioma behind her eye, which had also grown into her skull bone.

With Elly’s eyesight at risk, she underwent two surgeries to ‘de-bulk’ the bone, creating more space for the tumour. From October to November of last year, Elly completed a grueling round of daily radiotherapy, spanning six weeks. As Elly’s tumour remains inoperable, the doctor’s hope that her treatment will stop the tumour from growing.

To this day, Elly has been supported by her loving family, including her husband and three year old son. Whilst some of her friends didn’t quite understand the reality of being diagnosed with a non-malignant brain tumour, Elly could always count on the compassion she received from Janice:

“Janice[…] was always supportive – she was never one of those people who dismissed my symptoms and worries and said things like, ‘It’s great because it isn’t cancer!’ or, ‘It’s so great because you haven’t lost your sight’. Instead, she listened to me, tried to understand how I felt and how to support me. Janice said ‘Yes, this is really awful. How can I help you?'”

“What are the odds?”

Whilst Elly was receiving treatment for her brain tumour, Janice woke up with temporary paralysis and her foot contorting. Janice suspected she’d had a seizure and went to A&E. She was later examined and told that what she had experienced was not a seizure. The weakness in her limbs was a concern, so she was referred for an urgent MRI. Months later, as Janice parked up her car, she began to experience the same symptoms. Following further investigation, Janice was diagnosed with an atypical meningiona – the same diagnosis as her dear friend, Elly.

““It took a long time for me to get diagnosed. I suffered for years with what I now know were direct symptoms of my tumour, but I couldn’t recognise that at the time. My symptoms included confusion, mental exhaustion and extreme difficulty concentrating. At the time, my work environment were not supportive, and I experienced workplace bullying which affected my confidence massively. Looking back, I’d had symptoms for years. They were the same ones associated with the chronic stress and anxiety I had experienced at work, so I didn’t realise there was more to it than that.”

Despite the devastation that a brain tumour diagnosis brings, Janice and Elly’s bond grew even stronger because of their shared experience and true understanding.

“We’ve lived together, worked together, grown into real-life adults together, and now… have matching brain tumours together. What are the odds? Well, microscopically low, and yet here we are.”

Reflecting on her personal experience, Janice shares the importance of confiding in someone who knows how what you’re going through and how you’re feeling. Janice said:

“Some of the reactions you get can feel patronising or insensitive, even though you know people mean well at the time. You appreciate their intention to be nice. Almost always after finding out about our tumours, the first thing we’d hear from people would be, ‘Oh, it’s benign? Oh, well that’s fine then! What a relief!’ But it wasn’t a relief to us! So it’s been great to have someone who really understands that it’s good to be positive, but that there’s nothing really fine about this experience. The trauma of the diagnosis alone is life-changing before you even have a chance to process anything else.

I can come out of a radiotherapy session that’s left me in tears, give Elly a call and she just gets it because she’s been there. So instead of trying to cheer me up she says, ‘It’s terrible, really terrible and we have a chat about that.’ There’s no pressure to ‘cheer up’ or ‘or don’t worry’ – just support and empathy of a shared experience.”

In December of last year, on her birthday of all days, Janice had a craniotomy, and just last month, she completed a six week course of daily radiotherapy treatment to try stop her tumour from growing any further.

“It’s been great to have someone who really understands”

Now, on a mission to connect and support the wider brain tumour community, Janice and Elly have created ‘The Brain Tumour Twins’ raising funds for brainstrust in support of others with a meningiona diagnosis.

Their shared experience, caring personalities and thriving careers combine together to fuel their mission for 2021. Elly, a Trusts and Foundations Officer at CAFOD, already spends her days tackling poverty and injustice across the world. Janice, a qualified coach and facilitator, is also the founder of ‘Eating With Elephants’: a supper club tackling loneliness and social isolation through the power of communal storytelling. Now, in addition to their already-heroic day jobs, these two best friends have set themselves an extraordinary goal – raising thousands of pounds to amplify and extend direct support available to meningioma patients and their loved ones.

This coming Wednesday is Janice’s birthday. It also marks one year since her craniotomy. The pair have chosen this day to begin their fundraising efforts, hosting their first virtual event.

Janice and Elly want to recognise the 30 people who are diagnosed with a brain tumour every day here in the UK. That’s why they have decided to walk, run, swim or cycle one mile, as will 30 of their closest friends from across the globe. Each mile honours and recognises the life-changing personal journey that Janice and Elly know all too well.

Having raised over £3,100 already, Janice and Elly are committed to making an incredible difference. To follow and support them on their journey, please visit their JustGiving page or search ‘brain tumour twins’.

 

 

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