Brain Tumour Know Hows

Quick guides to give you key facts about important topics to you on your brain tumour journey.

Taking control

When living with a brain tumour diagnosis, lots of things can suddenly feel like they are out of our control and it can be difficult to know where to turn and what to focus on. These Know Hows cover a range of topics designed to help you take control of what is happening at the moment and develop strategies to help you to find a way forward.
Mindfulness

Mindfulness

The practice of mindfulness is about taking the time to focus on one particular task or activity, feeling relaxed yet awake and aware, and being completely in the present moment.

When practised regularly, mindfulness can help to reduce stress and anxiety, which can help your emotional well-being and aid sleep. This Know How explores way that you can practice mindfulness when living with a brain tumour.

 

Download the Mindfulness Know How

How to build a supportive team around you

How to build a supportive team around you

Because brain cancer is a less common cancer, it is hard to find anyone who has a shared experience, someone who really understands what it is like. And as a caregiver, this can be really hard. One way to address this is to make sure that, as a caregiver, you have a supportive team around you. Social support is important – it acts as a buffer and helps with general well-being.

 

This Know How will help you build a supportive team so you can cope better when a loved one has a brain tumour.

Download the How to build a supportive team around you Know How

How to be assertive

How to be assertive

Assertiveness is often needed to make sure you get the support you need when living with a brain tumour diagnosis. Being assertive, when done well, can be transformative. It can bring clarity to a confusing situation, progress a situation that is stuck and bring a sense of equality to a conversation.

This Know How will help you use assertiveness to get the support that you need.

Download the How to be assertive Know How

How to live with uncertainty

How to live with uncertainty

When you have been diagnosed with a brain tumour, you feel that your life is less secure, more fragile than it once was. You find yourself living in a space where nothing seems certain anymore. It’s a scary place to be, and it can leave you feeling out of control and overwhelmed.

This Know How will help you get comfortable with living with uncertainty.

Download the How to live with uncertainty Know How

How to have a voice as a caregiver

How to have a voice as a caregiver

Being a caregiver is a daunting role – you need compassion, fortitude and fierce resilience. And more often than not, you are living these values on behalf of your close person, but never for yourself.

This Know How will help you find your voice as a caregiver of someone with a brain tumour.

Download the How to find your voice as a caregiver Know How

How to deal with the overwhelm

Dealing with the overwhelm

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When situations change, it is hard to know which way to turn. Things that you did so easily suddenly become overwhelming. If you are a person living with a brain tumour, there may also be changes in your ability to function as you used to. Some things are within your power to change. Some are not. This Know How is designed to help you understand the difference, and prioritise the things that you can have an impact on.

Download the Overwhelm Know How

How to handle conflict

How to handle conflict

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When you are living with a brain tumour, emotions can run high, as people are living with stress. At times like this, we tend to go to our default behaviour – what we know – and this can make things worse. This Know How will help you understand how to handle conflict, and try and turn it into something productive.

 

Download the How to handle conflict Know How

How to bring structure to your day

How to bring structure to your day

As humans we are very good at adapting to what is happening around us- adapting is what we do all the time. But it is doing the adapting that takes its toll. A brain tumour diagnosis may have brought on big changes in your day to day life, with further changes made due to COVID-19 in March 2020.

In this Know How you find strategies to help you to bring structure into your day and manage these transitions.

Download the How to bring structure to your day Know How

How to feel supported as a young carer

How to feel supported as a young carer

If you are under 18 years old and are helping to take care of someone with a brain tumour, you are a young carer. You could have a sibling, parent or relative with a brain tumour who you are helping to take care of.

This Know How will help you to feel more in control and supported as a young carer.

Download the How to feel supported as a young carer Know How

How to deal with scanxiety

How to deal with scanxiety

When you are diagnosed with a brain tumour, MRI scans become an integral part of your care plan. Because of this, scanxiety – fear and nerves around both the scan and the results – is something that many people with a brain tumour diagnosis experience.

This Know How will go through some strategies to help you cope with scanxiety and feel better prepared and more in control in the run-up to MRI scans.

Download the ‘How to deal with scanxiety’ Know How

Coping with bereavement

Coping with bereavement

Losing somebody that you love is devastating, and can coping with your grief can feel incredibly isolating.

When somebody close to you passes away following a brain tumour diagnosis, although it may be something that you have been expecting, the feelings of grief can hit quite unexpectedly. Losing somebody that you love is a devastating and emotionally challenging experience to go through, and nothing comes close to matching the emotions you experience.

In this Know How, we will explore what we mean by grief and how it can affect us, as well as some coping strategies and support information that can help.

Download the ‘coping with bereavement’ Know How

How to make the best of the time I have left

How to make the best of the time I have left

There can come a time when treatments no longer work and options have run out, and we are left facing the fact that our time is limited.

This Know How will explore more about making the best of the time you have left including finding out what matters to you and how to achieve it.

Download the ‘how to make the best of the time I have left’ Know How

How to set personal boundaries

How to set personal boundaries

When you are living with a brain tumour, or you are caring for someone living with a brain tumour it can leave you feeling lost and fearful of what lies ahead. Having boundaries can bring back a sense of control and help you to navigate what it is important to you.

This Know How will explore what we mean by personal boundaries and how you can set them.

Download the ‘how to set personal boundaries’ Know How

How to feel part of a community

How to feel part of a community

When living with a brain tumour diagnosis, you may automatically find yourself being part of a community that you never intended to or wanted to become a part of.

This Know How will explore more about what it means to be part of a community when living with a brain tumour diagnosis and how you can get involved and build a supportive network around you.

Download the ‘how to feel part of a community’ Know How

How to find a new normal

How to find a new normal

If you can find a new normal following a brain tumour diagnosis, it means that you can own the situation, take control and live with the life you want.

This Know How will explore what this means and some strategies to help you find a way forward.

Download the ‘how to find a new normal’ Know How

How to feel less alone

How to feel less alone

Living with or beyond a brain tumour can be incredibly lonely and isolating.
This Know How will outline some of the things you can do to feel included, not isolated.

Download the ‘how to feel less alone’ Know How

Newly diagnosed- knowing what to ask

Newly diagnosed- knowing what to ask

Nothing can really prepare you for the news that you or someone you love has been diagnosed with a brain tumour.

In this Know How, we will explore some resources and information that can help you to find out what you need to know following a new diagnosis of a brain tumour and the support that is available to you.

Download the ‘newly diagnosed’ Know How

How to manage changes in your relationship

How to manage changes in your relationship

Living with or beyond a brain tumour can put a strain on both existing and new relationships.

In this Know How, we will explore some resources and information that can help you to manage changes in relationships when you or someone closed to you is diagnosed with a brain tumour.

Download the ‘how to manage changes in your relationships’ Know How

Information about treatment

Being able to access reliable information about brain tumour treatment can help to better inform your decision making and know where to go for further support if needed. These Know Hows cover a range of topics related to brain tumour treatment to help you feel better resourced and more engaged with your clinical care.
How to get a second opinion

How to get a second opinion

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We are often asked about second or even third opinions. Seeking more opinions has both advantages and disadvantages. This Know How has been designed to help you understand the pros and cons of a second opinion, bring some clarity as to what the options are and inform you how to go about seeking another opinion.

 

Download the Second opinion Know How

Immunotherapy

Immunotherapy: DCVax®

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Brain tumour immunotherapy, particularly DCVax®, is gaining an increasing amount of media coverage and interest. We are seeing a growing number of calls to our support helpline about DCVax® and brain tumour immunotherapy. This Know How sheds some light on the current state of play for one particular brain tumour immunotherapy trial and some recently published results.

 

Download the DCVax® Know How

Cannabinoids

Cannabinoids

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This Know How is intended to bring some clarity to a confusing topic. Medicinal cannabis is a broad term for any sort of cannabis-based medicine used to relieve symptoms. There are many mixed messages about cannabis in the media and within the brain tumour community. Many cannabis based products are available to buy online, but their quality and content is not known. They may be illegal and potentially dangerous. Certain things inside cannabis contain anticancer properties, but this does not make it an anticancer treatment.

Download the Cannabinoids Know How

Ketogenic diets

Ketogenic diets

Certain diets and nutritional approaches are often spoken about in the media and elsewhere as being potentially helpful for people living with a brain tumour diagnosis, which may have caused you to wonder whether you should be thinking about particular nutritional approaches for your health.

This Know How offers an overview of the ketogenic diet in order to help you decide whether this is something that you wish to consider for yourself.

Download the Ketogenic diets Know How

How to prepare for medical appointments

How to prepare for medical appointments

When you are living with a brain tumour diagnosis, this can mean that you will have regular medical appointments and check-ups at any stage of the pathway. They are a key part of your clinical care and are where you will get key information about your condition and treatment plan.

This Know How will help you to prepare for your medical appointments through different tips and strategies.

Download the How to prepare for medical appointments Know How

How to prepare for medical appointments as a caregiver

How to prepare for medical appointments as a caregiver

When someone you love is living with a brain tumour diagnosis, they will have regular medical appointments and check-ups at each stage of their pathway. These appointments are a key part of your loved one’s clinical care and are an opportunity for you to get key information and ask questions about their condition and treatment plan.

It’s not always easy as a caregiver to find your voice in a consultation. In this Know How, we will explore how you can feel prepared for medical appointments as a caregiver, how you can make the most of the time you have with your loved one’s clinical team, and some strategies to help you feel more resilient and on top of things.

Download the How to prepare for medical appointments as a caregiver Know How

Practical advice

There are lots of different aspects of our lives that can be impacted by a brain tumour diagnosis and having access to practical information is key to knowing what support is available. These Know Hows cover a range of topics designed to provide you with practical information and further reading to help you know your options.
Money worries

Money worries

When you are diagnosed with a brain tumour, you may find yourself worrying about finances. You may be worrying about losing your job, about being on reduced pay, about running your own business and being unable to work. Or perhaps you are a caregiver, and you are not sure how you are going to manage being a caregiver and also keep working.  You can suddenly find yourself in financial difficulties for any number of reasons.

This Know How provides you with a framework so that you can deal with money worries.

Download the Money worries Know How

Lasting power of attorney

Lasting power of attorney

We are often told by our community that there is a lack of information and signposting to support patients and their families in managing their personal, financial, legal and health affairs.

This Know How explains all about lasting power of attorney (LPA) to help you to consider whether this is something that you need to implement.

 

Download the Lasting power of attorney Know How

How to get a carer's assessment

How to get a carer’s assessment (England)

This Know How will explain what extra support may be available to you as a caregiver in the form of a carer’s assessment. It will go through what the assessment is and how to apply for it, and it will also signpost some useful organisations that may be able to support you.

 

 

Download the How to get a carer’s assessment Know How

Finances and benefits

Finances and benefits

No longer being able to work, new and expensive mobility requirements, having to travel long distances to get to hospital – whatever the reasons for you, having a brain tumour can be a huge financial strain.

The latest brain tumour Know How covers finances and benefits that could support you and your family when one of you has a brain tumour.

Download the Finances and benefits Know How

Reliable websites

Reliable websites

Access to the internet at the tips of our fingers has made getting hold of information quicker and easier than ever, but how can you know what sources to trust? Misinformation spreads fast online, and is sometimes shared by people with a large following.

This Know How will help you to understand what reliable websites look like, establish fact from fiction online and stop feeling overwhelmed by the volume of information available.

Download the Reliable websites Know How

Driving

Driving

We know that you have lots of questions about the impact your diagnosis will have on your ability to drive. If you need to give up your driving license, this has a massive impact on your independence and well-being.

This latest Brain Tumour Know How covers everything from telling your insurance provider, how long it might be until you can drive again to ways to manage the loss of your license.

Download the Driving Know How

Returning to work

Returning to work

Returning to work can be a big step in recovery. It can bring a sense of normality, stability, routine and social contact. But we also know that it can be very daunting. This Know How will help you to prepare for returning to work, understand what help is available to you.

It has been written to encompass returning to work after bereavement as well as illness.

Download the Returning to work Know How

The choice of topics are driven by the needs of our community. So, if we have lots of questions around a focus, such as immunotherapy – hey presto, a Know How will be written.

Where a Know How involves health information, they are written following our rigorous Information Standard process, so that you know the information is trustworthy and reliable.

If you would like a Know How written, please email hello@brainstrust.org.uk. And of course, if you’d like to chat about any of these Know Hows then don’t hesitate to get in touch.

Did this information make you feel more resourced, more confident or more in control?

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 cancerousNon-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