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For World Wellbeing Week 2023 we’re taking a closer look at a common, yet sometimes overlooked, aspect of dealing with a brain tumour diagnosis and its surrounding journey. That being, anxiety. In this article we explore why anxiety is prevalent in the brain tumour community and provide tips and resources for living better with anxiety. 

According to The Mental Health Foundation, an average of 37.1% of women and 29.9% of men in the UK reported high levels of anxiety in 2022/2023. That is around 1 in 3 people and unfortunately, despite how much of a shared issue is for so many in our society, it can still feel incredibly daunting to talk about. This is made harder still when combined with the added challenges of a brain tumour diagnosis.

We want to acknowledge that anxiety is normal for those dealing with a brain tumour diagnosis, raise awareness of how and where it presents, and provide methods of coping where possible.

 

Anxiety in the brain tumour community

Experiencing anxiety at any stage following a brain tumour diagnosis, is normal and valid. However, there are certain challenges that come with a brain tumour diagnosis that can significantly contribute to feelings of anxiety.

Scanxiety

brainstrust know hows scanxiety cover 1

There are points of clinical significance that can trigger anxiety, especially around the process of scanning. Initial diagnosis, getting a new scan to check for progression, as well as the uncertainty of waiting for scans and results can all create feelings of powerlessness and anxiety. Our resource on dealing with ‘scanxiety’ can help you cope better with scanxiety.

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Behaviour and personality changes

The ways in which a brain tumour and its symptoms can affect your sense of self can also be anxiety-inducing. Changes to behaviour, personality, ability and cognition can impact our mental

health and how confident we feel in ourselves. There are ways to alleviate this weight and feel supported and resourced throughout your journey. Visit our page on behaviour and personality change to find out more about our support.

 

Living better with anxiety – support and coping skills

Anxiety, like most mental or physical health conditions, isn’t something that can be remedied with a quick fix. It takes care, attentiveness, and self-compassion to ease.

Here are some ways to cope with anxiety:Coaching testimonial

Sharing your experience – having someone to confide in can provide connection, validation and an opportunity for us to share our worries. It’s normal to feel concerned about how this may impact your relationship with a loved one, but having an open dialogue about your needs and concerns can help to build a mutual feeling of support and trust.

Sharing your experiences with healthcare professionals, or doing coaching or counselling, can help you speak honestly about your experiences. These conversations allow you to gain professional support and guidance about how you can best move forward.

brainstrust offers a coaching service, matching you with a trained, region-based support specialists who will use coaching to help you to make courageous decisions about your life. Coaching conversations focus on clear goals that you can work towards to achieve a better quality of life. To learn more, click here. We also offer a peer support service, offering you a space to connect with someone who has been in your shoes. And you can attend meet-up groups and webinars where you can share with others having similar experiences.

brainstrust know hows mindfulness

Some other ways to manage anxiety include:

  • practicing breathing exercises during stressful situations
  • improving our physical health through diet, exercise and sleeping well
  • practicing mindfulness exercises such as journaling. Find out more about how you can practice mindfulness, download our mindfulness know how here.

 

 

 

 

 

Get support today

Anxiety can be a very isolating experience, full of doubts, worries and fears. But we can counteract the intensity of it by having empathy for ourselves, and taking advantage the support available.

To talk to a brainstrust support specialist about how we can support you to manage anxiety relating to your brain tumour diagnosis, call 01983 292 405 or email hello@brainstrust.org.uk.

Additionally, you can contact the Samaritans by calling 116 123 or emailing jo@samaritans.org if you need someone to talk to.

 

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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