Frances’ Story

I was originally diagnosed in 2010 after a scan following an unusual migraine aura where I lost the ability to speak for a few minutes. I was followed up in Coventry for the next 3-4 years with no plans for any surgery or similar. In the meantime I qualified as a Doctor and married my husband Alex who has been with me since my diagnosis.

In 2013 I decided to have my care transferred to Cambridge as my A&E training was going to be based here.

No surprises?

I can remember sitting with Alex in the Clinic waiting room – the clinic was running late and we were quite relaxed.

We weren’t expecting any surprises. We had been seeing Oncologists and Neurosurgeons for the last 3 years in Coventry after all with the same opinions every-time (no surgery, watch and wait, possible later biopsy). When we were called in we went through the usual ritual of introductions and going through my story…

In 2010 I was in the kitchen talking to my Mum when I had an episode of loosing the ability to speak (called expressive dysphasia). Like all my words were at the tip of my tongue but I couldn’t get them out. The episode lasted about 2 minutes, which really stressed me out, so I started crying and that stressed me out even more. I was really tired and emotional anyway as I was about to drive back to Medical School. I developed a severe migraine following this and thought nothing of it, putting it down to a migraine aura. But on insistence of Alex I was sent to the GP who sent me to the Neurologist who did the MRI and the rest, as they say, is history.

The Neuro-oncologist listened and then said the words “I am about to show you some scans, and this is not pre-medidated” – I think it was at this point that both Alex and I knew that this was not good.

All a bit of a blur

Mr Watts brought up two scans, one from June 2010, my first scan, and one from 2012. It was immediately apparent that the scans showed differences and showed obvious enlargement. I will admit what followed was a bit of a blur. I think Al took in more of the information that me, which probably explained his pallor when we left the clinic room. I was introduced to Mr Santarius who ended up doing my surgery and has been absolutely wonderful and continues to be amazing. From the moment I knew about the surgery there has never been an ounce of doubt in my mind and I knew that I have had all of the support in the world to do this.

My admission date was set for the 6th June, a Thursday. (Ironically D-Day as Al often remarked). My operation was going to be on the 7th June. I was going to have an awake Craniotomy. It needed to be awake as it was crucially important that the surgeon was able to control how much he was able to resect without causing lasting damage to my speech centre.

The operation itself was amazing. I had complete trust in my surgeon and anesthetist. I was asleep for the first hour whilst I had all of my monitoring inserted and my skull flap removed and then was woken up during the surgery so I could be tested during the surgery. It truly was amazing. The operation lasted 7 1/2 hours due to further complications and I was back on the ward by 11.30pm to be greeted by by husband, mother and aunt. Being able to phone them myself after the operation was amazing. I was crying when I did phone them. It was a very emotional moment. A bit like running a marathon, but on a very much larger scale. The relief felt by all was palpable. But I was not out of woods yet, and sadly I would come to experience that in the weeks to come…

The following morning I felt like I could take on the world

A couple of hours later I did not feel quite so enthusiastic… But I was still happy!!

Recovery is a fight too

I was discharged from hospital on the 10th June. Every day I got stronger. Until the 19th June when I woke up with a swollen face. I looked much like I did the day after surgery. One the 20th June I was readmitted to hospital with sepsis and a suspected infection in the bone-flap. These infections can be very serious and I was immediately put on hard-hitting antibiotics.

I was discharged again on the 27th June, but another admission with even more severe sepsis and a dropped white cell count followed on the 3rd July which condemned me to a longer course of antibiotics.

It was a scary time for me and my family, I think coping with the surgery we were all ready for, but it was a bit of a shock having to deal with complications we were completely not expecting. I have been lucky that the infection has been able to be treated with IV Antibiotics though and I did not have to have the bone-flap removed! On the 1st August my Antibiotics were completed and my PICC line was finally removed. I returned to work on the 19th August. There is only so much sitting around at home I could do before I started to drive everyone else crazy.

I now have a diagnosis of Oligodendroglioma Grade II, (Dubbed ‘Frank’ by Al many years ago). By definition this kind of brain tumour is not curable as unlike other kind of tumours they cannot be completely resected as by completely resecting them they will cause too much damage to the surrounding brain. I may require more surgery in the years to come, but we are not sure yet and will have to closely follow the tumour’s progression with MRI’s. When the tumor changes to a higher grade (which may happen) I will require chemo and radiotherapy. Hopefully that is something we will be able to see on a scan.

here are lots of different things said about the average life expectancy of brain tumour patients after surgery and how long patient’s life’s can be prolonged on average with surgery. I try not to read to much about things like that. I like to take each day as it comes.

You never know what’s around the corner

I work in an environment where on a daily basis I see patients whose live’s have changed forever in a blink of an eye – sometimes due to Road-traffic accidents, sometimes due to other life changing events such as strokes, heart attacks, or a cancer diagnosis – I think that opens your eyes to that fact that life is a very precious thing and that you should treasure it. Make the most of what you have.

You never know what is around the corner.

It feels great to do something positive, and to take control

I want to run the Reading Half-Marathon because I want to be able to raise money to give hope to those people who have been recently diagnosed with a brain-tumour to show them that there is hope. I want to show them that although it’s scary (and I know it is) that you need to be brave and you need to hold your head high. I am now epileptic as well and I have to wear my medic-alert necklace everywhere – it knocked my confidence incredibly when I had my seizure and for a while I really did loose my mojo but you just need to keep on going.

I know I am a very, very lucky girl. I am very loved, have an amazing husband, family and friends. I have a job that gives me purpose and fulfillment. I have recently read an amazing book by Dr Kate Granger, a young Doctor who has also been diagnosed with a far more advanced and aggressive cancer, and I would like to finish with this quote

“I am incredibly thankful for so many aspects of my life including my wonderful family, friends and colleagues, and a profession I love that gives me a sense of purpose. I am determined to keep smiling and remembering that there are many people out there far worse off than me.

Life is far too short.

To be sad.

To be mad.

To hold regret.

To look back.

To be depressed.

To be unkind.

Be nice and do good.

Everyday is new.

Who knows how long I have left but I will continue, as a famous song says to always look on The Bright Side of life…”

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