In Patient story

After suffering with migraines for years, Kay was diagnosed with a large Meningioma and had to undergo surgery. Kay has written about her experiences from diagnosis, through to surgery and recovery. Below we share a few excerpts from Kay’s story, if you’d like to download and read her full story please click here.

Getting the diagnosis

Having suffered with migraines for years and trying a number of different medications my GP referred me to the neurology department at the hospital, after waiting 6 months I finally had an appointment on 8th February this year where I discussed my symptoms and requested an MRI scan. I had the MRI scan 4 weeks later on 11th March.

Driving home from work on 14th March, I had a call from the hospital asking me to go in the following day to discuss the results and that I should probably bring someone with me. I knew instantly that it didn’t sound good but tried to stay positive. The next day the neurologist told me that the scan showed that I had a large Meningioma in my occipital lobe, these tumours are usually benign and slow growing, but as mine was already quite big I would need surgery to remove it as there really was no other option. What a shock! I don’t know what I expected to hear but it wasn’t that. I was told the surgery would probably be within weeks, it was a lot to take in. I had bloods done there and then in preparation and cried all the way home.

Waiting for surgery

I had an appointment with the neurosurgeon at UHCW on 14th April, he showed me the MRI scan and I was shocked at how big the tumour was (5.9cm), we discussed the surgery and the risks and he basically told me it had to come out and he would prefer it to be sooner rather than later so he added me to the list and I just had to wait for a date.

The not knowing drove me mad, when would the surgery be? Would I be ok? What if I wasn’t? Should I have it? During this time I continued to work and I hadn’t told many people my situation, partly because I just wanted things to be as normal as possible and partly because I’m no good with sympathy and didn’t want people treating me differently, I think there was also a part of me that thought if I didn’t talk about it then it wasn’t happening, although it was constantly on my mind and I thought about it from the second I woke up until the second I went to sleep and every second in between!

Undergoing surgery

10th May, the day before my op was one of the worst days in my life so far, thinking that I might not ever see anyone again, or things might not be the same after surgery, just trying to get through the day the best I could but I don’t think I have ever been so terrified in my life. Visiting time came and saying bye was so hard, I cried a lot and for a long while afterwards.
Surprisingly I slept quite well, woke up had a shower, put on my gown and I FaceTimed Lee and the kids before they went to school and then boom I was ready, let’s do it!

I was taken down at 8.52am, I remember the time as I sent my last text to Lee. I woke up in Critical Care at 7.15pm, although I was a bit out of it I actually felt ok, the op was a success and they    believe they had removed all of the tumour, my blood pressure was a little high and fluid was being drained from my brain but they were hoping to move me to a ward the next day. I had an ok night, not much sleep, a little uncomfortable, very thirsty, wires and cannulas sticking out of me everywhere but all was good…I was alive!

 

I spoke to Lee on the phone the next morning and he and my mum were coming to visit at 11am, I was counting down the hours, couldn’t wait to see them. I was sitting up, I’d even had breakfast and a cup of tea by the time they got there and they couldn’t believe how well I looked. I did it, I actually did it! I was moved to the ward later that day. The drain was removed and I felt quite well although very tired and I kept hallucinating when I closed my eyes which worried me slightly, although when I mentioned this to the doctor he said it was quite common after surgery of this kind and it could also be a side effect of the medication! Phew! (This lasted a few days) I was assessed on my walking ability, vision and movement
on 15th May and spoke to the consultant who said I should be able to go home the following day!

16th May, 5 days after a 7 hour craniotomy and 18 days in hospital I was discharged, I’ve never felt so happy to be going home where I belong and to see my family and friends! What a journey!

Life after surgery

When I first arrived home I spent almost every day in bed and slept so much bit woke up at silly times during the night for hours on end but it did get easier and after a couple of weeks I was making it downstairs for a few hours at a time, I had my staples removed 11 days after surgery and the wound looked to be healing well.

On 18th July, 9 and a half weeks after my surgery I returned to work, this was only on a part time basis for 4 days but was a step in the right direction and something I wanted to do (I work in a school so it was coming up to Summer holidays).

A week after we jetted off on our hols, although very hot and very tiring the holiday was just what we needed and even though I have non stop slept since we got back we had the best time with some of our best friends and the flight was fine.

I’m still suffering with tiredness and fatigue and other people who have been through the same have said this can last months and maybe even years so I guess this could just be a new way of life that I have to get used to. I’m taking anti convulsant medication which I will continue with for at least a year to prevent seizures which up to now I have not suffered with pre or post op and I’m still waiting to hear back from DVLA regarding my driving license but my consultant did say I couldn’t drive for 12 months so I’m following that advice until I hear differently which you don’t realise how much this impacts you until it happens, luckily I have a very good friend who has offered to take me to work and takes me out when the 4 walls get too much! Thankfully there have been no migraines since April and I hope it stays that way.

 

What I want the world to know

One thing I will say is just because I’m smiling doesn’t always mean I’m ok, some days are harder than others but I’m still here to tell my story and I couldn’t have done it without my amazing family and friends.

Life goes on….
Don’t sweat the small stuff!

 

You can download Kay’s full story here

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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