From the first symptoms through to diagnosis and treatment James has dealt with his brain tumour diagnosis all whilst juggling a demanding career and preparing for the birth of his first child. Here James tells his story thus far.

My brain tumour timeline started in early to mid-2021. I was getting married to my now wife, however Covid-19 thwarted that twice, partly as my wife is Australian so her family couldn’t get to the UK. So my wife and I had decided to try and start a family rather than wait until after our wedding. We were both in finance jobs that were fairly time intensive and I had been in these types of roles for around 15 years.

I had a serious disagreement with a work colleague in mid-2021 and entered mediation around the same time. Around then I started to experience sudden feelings of wanting to vomit during the night but I was never sick and this extended to a smell of bleach that wasn’t there. I initially thought it was due to being in a stressful situation at work. I ended up resigning from my job partly due to this, as I felt it wasn’t worth my health.

Once I left my job, rather than my symptoms improving they actually got worse. The feelings of wanting to vomit was happening two or three times a day and rather than only at night, it was occurring during the day. By this point I had been to a GP a couple of times and had blood tests etc, which all came back normal.

Towards the end of 2021 my wife and I found out we were going to have our first baby so 2022 was going to be an exciting year with a new job and a baby.

After becoming frustrated with the symptoms, I asked for a referral and the GP referred me to a gastroenterologist. The specialist was slightly confused by the symptoms and asked if I minded taking several tests to rule out other issues. One of the tests was a CT scan which was scheduled for the 5 January at 9am. After the initial CT scan the nurse came in and said the specialist had been walking past at the time and suggested I have dye/contrast injected, which was fine by me. I really didn’t have any idea what they were looking for or what could show up through the CT scan.

At midday on the 5 January I was called by the gastroenterologist who said they had found a “mass on my brain” and I should go straight to A&E. My wife took me to A&E for a further full body CT and MRI scan. Luckily the CT scan showed no other issues (i.e. the brain tumour was a primary not secondary) and the MRI the next day showed more detail of the tumour.

I was referred to a consultant surgeon who explained that the tumour was a right fronto-temporal insular astrocytoma. Unfortunately it was in a difficult position as it was in the middle and went down through the brain. As such, some of the tumour couldn’t be removed without a significant risk, but a decent amount of debulking could be performed (approximately 70%, which was the size of a satsuma) plus that would allow a full tissue diagnosis.

I was told the tumour wasn’t genetic or lifestyle based which was a relief as I knew we had a baby on the way.

I also spoke to a Neurologist who explained my symptoms were a form of seizure, which was fairly strange as I always thought seizures were similar to convolutions.

I have never googled the tumour, solely relying on the experts if I had any questions. I have never asked for a long term prognosis. I haven’t told people from a work/industry position as I didn’t want to risk my long term employment chances or become something everyone asks me about.

After speaking to brainstrust I spoke to another surgeon to get a second opinion who confirmed everything I had been told in terms of what could be removed.

My wife and I were married in January 2022, partly to make things easier if the worst were to happen. Only my parents were there as witnesses as it didn’t feel like our true wedding.

I had my operation in April 2022 and it was successful (removing 70%) and I had no noticeable side effects, which I still find amazing. I was then referred to an oncologist and since then I have had six weeks (five days a week) radiotherapy and I’m halfway through chemotherapy that should take me from September 2022 to June 2023. From the tumour tissue tests they think it’s grade 1 but with some grade 2 characteristics. I sometimes wonder how I have got this far and how “lucky’ I am.

My wife gave birth to our baby daughter in August 2022 so 2022 has been a bit of a blur with some amazing things and some really hard things.


If you’d like advice on getting a second opinion like James, visit our page on second opinions here. For more support and advice, call 01983 292 405 or email


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:


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 tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites


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.


Not cancerousNon-malignant tumours may grow larger but do not spread to other parts of the body.


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

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here: