Almost a decade ago, Trish had a grand mal seizure in 2014 whilst driving her car. Following a CT and a MRI, she was diagnosed with a low grade oligodendroglioma, which grows slowly and affect mainly her left frontal lobe.

Since 2014, Trish has received excellent hospital care in treating her rare cancer, which accounts for about 3% of all primary brain tumours (Cancer Research UK). However, as a single-parent of a then 8-year child, she has always relied on her amazing friend network for a more “soft-touch” support.

Trish’s love of giving back and passion as a NHS doctor for caring and supporting led her to recently join the brainstrust Peer Supporter Service. She became aware of this Service and was impressed by the professionalism of brainstrust at their monthly Low Grade Glioma online meetup.

The medic believes patients appreciate peer supporters due to their “lived reality”, empathy and as sounding boards to ask any question that might “look stupid” to the medical team. She views herself as an open person, who is currently mentoring a fellow Edinburgh brain cancer sufferer.

Bumpy cancer journey so far

Although there is a so-called post-code lottery in terms of cancer care in Scotland, Trish considers herself lucky with the treatment provided by her Edinburgh medical team throughout her “quite bumpy” journey. As a consultant dermatologist, Trish is happy to be a patient but also likes to get the latest treatment development updates.

Her first surgery was “mega” as the physical handling of brain tissue in the awake craniotomy had a significant impact. Post-surgery, Trish was left with considerable mental fatigue and a loss of her brain’s higher executive function. Have a look at our Fatigue booklet here.

The medic then had active monitoring with serial imaging scans, which detected another tumour reoccurrence, resulting in a further surgery in 2022. This time they could “go in through the trap door (i.e. the skull bone flap created by the previous craniotomy) ” and resulted in a much smoother post-operative recovery.

Unfortunately, Trish is now awaiting a gruelling regime of radiotherapy and a chemotherapy regime called PCV, after an inoperable reoccurrence was identified in 2023. Throughout the journey, she highlights how her medical team have been quite collaborative in presenting her with treatment options.

The silver lining of neuroplasticity

Until now, Trish remains indebted to her son for giving her a sense of purpose in the early days, post-surgery. She is incredibly proud of her resilient son, who is now at university and then made “her get out of bed and get on with life!”

After the 2014 surgery, Trish attempted a phased return as a dermatologist but ended up being signed off in May 2015. During her patient consultations, e.g., she struggled to adjust her language to explain complex conditions in a way patients would understand. In other occasions, when obtaining patient clinical histories, Trish got overwhelmed distilling the clinical facts from the random side commentary patients made. To find out more information about returning to work post-surgery, check out our Return to Work Know How here.

Trish decided to keep herself busy with a voluntary role as a Prison monitor and by playing the card game Bridge, which she always loved. Engaging in these sort of activities might have encouraged her brain’s neuroplasticity. As a result, Trish was able to undergo rigorous cognitive testing to regain her General Medical Council license and successfully return as a part-time dermatologist in May 2020 in the middle of the COVID-19 pandemic.

Trish’s impressive neuroplasticity allowed her to come back to medicine, which she truly loves and gave her a new sense of purpose. However, as a peer supporter, her final message is for brain cancer sufferers to have patience with their recovery: “Even if life seems devastating post-operatively, please don’t expect this to improve in the next 6-8months, give it at least 4-5 years!”

 

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