Leanne’s Story

Leanne’s brain tumour was diagnosed incidentally when she had a fall in 2006 and suffered a concussion. After a routine CT at A&E, she was told a mass in her brain had been found.

“I was in hospital on my own, as a single mum and was in total shock”

Leanne’s hospital completely misdiagnosed the tumour as they had no neuro-specialists on that night. They sent her home with little information, only advising she see her GP the next day. Not satisfied with this, she took action herself.

“I was lucky enough to know someone at Kings College Hospital at the time in the Neuro department and went straight in for an MRI the next day. They confirmed it was a tumour of some kind but a rare one.  I suppose the truth is I felt angry. I had lived such a healthy life, I just wondered what I had done to cause it. I now know nothing… but it’s hard not to try and find a reason”

Unbelievably, 6 weeks after her diagnosis, Leanne’s mum (who lives in New Zealand) also had a fall, a routine CT scan and was too diagnosed with a brain tumour. Although a complete coincidence, Leanne still finds this finds hard to come to grip with.

“My mum now has alzheimers and is very sick and her tumour just sits there without anyone assessing it as she is in no condition for even an MRI scan”

This gives Leanne even more reason for wanting to help brainstrust and brain cancer support in general.

Surgery

There were two different neurosurgical options for Leanne. One surgeon wanted to remove the tumour straight away, due to their lack of understanding of its type, and the second who wanted to monitor it, as she was asymptomatic, and surgery held greater risks than the tumour itself at that time.  She chose the latter, avoiding the surgery as she had no family in the UK and was a full time working, single mum who was petrified of where surgery could leave she and her daughter.

“My Neurosurgeon is an amazing man called Chris Chandler and I am very, very lucky to have met him. Well – I’d rather never have needed to meet him… but as that choice was out of my hands… I knew I was in the best care possible”

Between 2006 and 2011 Leanne’s tumour, which they thought was an epidermoid tumour attached to her frontal left lobe, did not change or grow. She had really started to believe it would stay that way forever as this was one of the possibilities Chris had presented. She had yearly MRI’s and clinic appointments and just got on with life. At her 2011 clinic appointment, she was even told by a registrar who saw her (the only time that she didn’t see Chris) that she could should be signed off next year as the tumour wasn’t growing.

But, she wandered into her 2012 appointment to see Chris, with no concerns, only to be greeted by a scan that showed growth and a completely different looking ‘beast’ on the screen.

“Lost for words doesn’t come close. Chris was very angry that I had been misled and said I should never have been told I would be signed off. Watch and wait had changed and now the chance of needing surgery was very high. I was still in the very lucky camp though. It was only growing slowly. But my ability to put it to the back of my mind had changed. I felt so unbelievably sad. Mentally – I had never thought this would happen, but now time was ticking. When you’re told that you’ll be assessed at the next appointment, but to come straight back in if you have any seizures of personality changes, you’re hardly filled with glee! They just didn’t know how to classify my tumour and it wasn’t clear enough on the MRI. Just another reason why we need more research!”

At her next appointment, Chris explained that the tumour needed to come out and then talked Leanne through the craniotomy.

“It felt surreal and for someone who never shuts up… I think I barely uttered a word. Weirdly, all I could think about was my hair being shaved… in fact that’s all I could focus on. I realise now that is just human nature, especially for women – the much bigger things were impossible to compute… except how to tell my 13 year old daughter. We are so close and it was incredibly hard for her”

After feeling let down by the lack of support on this score, and feeling unable to properly broach the subject herself, Leanne turned to brainstrust. She contacted Meg who then spoke to Leanne’s daughter Bella on the phone, and explained and reassured her about the operation. This was a blessing for Leanne.

Regaining Control

Leanne had some time off before surgery to sort out her personal life, as she had no close help except friends and a child who was 100% dependent on her. She had worked in fashion all of her life, but was at that time working in a very demanding role at Coutts bank as a luxury consultant.

Just after being told that she needed the operation, she had the head shaving discussion. Leanne was introduced to a Macmillan counsellor at Kings who had been trying help female chemotherapy patients cope with the effects that hair loss had upon women’s confidence.

“I wanted to do something to help, using my connections in fashion and get the bank to fund it. For the next 12 months and all through my operation and recovery I put together a project called Crowning Glory by Coutts. I had Coutts put up all the money, had Stella McCartney design some beautiful headscarves and I produced the scarves in Italy so they were the highest quality possible. We supplied a free headscarf to every single chemo patient at Kings College Hospital for a whole year. It was the most rewarding project of my entire career and in December 2013 (4 months after my op) I put together a launch event at The Macmillan Centre at Kings. We invited patients to an evening where they were taught ways to style their scarves, had Benefit help them with their makeup and new eyebrow techniques and also I arranged for a leading cancer nutritionist to chat to them. It was one of the most extraordinary nights of my life. It was a place patients could share their stories, feel part of something that was there to make them feel good and build their confidence. Confidence is such a huge factor in our coping through this journey – it gives us strength”

Life Now

Leanne’s operation was a success. Her tumour was in an operable position and her neurosurgeon believes that he has resected pretty much all of it. Pathology showed the tumour was completely different to what they had initially thought though. It was a DNET, a very rare tumour in adults, one that is hard to access information about and one that she probably had since teenage years.

Currently, Leanne has yearly scans to see whether the tumour decides to grow back. If it does – she’s been told it should be slow growing, but at some point may need surgery again.

“Although that is a very good prognosis compared to many and most of the time I can bury it, it still has the ability to keep me awake at night. I know how lucky I am but I am determined to make a difference for those less able to get up and shout loudly about greater awareness, more funds, more research and better care of patients when they really need it”

Leanne has always been a health and fitness enthusiast, using exercise to get her through the toughest times.

“It’s my therapy and makes me feel like I am taking some control of my own journey. I do a lot of research into diet and fitness and how it can benefit cancer patients and I also want to bring some of this knowledge to the BT community. I have been a runner all my life and was determined post my operation to get back out there as soon as I could. Every day after the surgery I walked a little bit further and I was back out running 3 weeks post my op. I took it slowly but it really helped my mood elevation because of the endorphins and helped me sleep and recover faster. I pumped myself full of fresh veg juices and had done a lot of reading about anti -inflammatory foods. All of this really helped me and still does”

This summer Leanne is planning on running the British 10k for brainstrust, alongside her closest friends. You can read about Leanne’s plans here.

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