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Step by Step: Your interactive guide to life with a brain tumour

Our Step by Step guide outlines what happens following a diagnosis, to answer your questions and help you to understand what to expect.

Starting from when you first start feeling poorly, through the practical changes you might experience, to what happens after treatment, we’ve outlined, step by step, what happens following a diagnosis.

Read our Step by Step guide

We’re here to help show you the way

One of the most common questions that our Support and Information team receive is “What should I expect?”

We know that after a diagnosis, things can feel really uncertain, and that you're introduced to a sometimes quite confusing process without any warning.

To help you navigate the journey, we've broken into stages:

  • looking for help & a cause for symptoms
  • getting a diagnosis
  • having neurosurgery
  • ongoing treatment and monitoring
  • managing life changes and rehabilitation
  • second line treatment
  • if treatment hasn’t worked.

It’s important to remember that not everyone who is diagnosed will go through each of these stages, and this doesn’t mean you aren’t receiving the right standard of care for you. For example, not everyone will have neurosurgery following a diagnosis, so you can just skip the sections that don’t apply to you.

For every stage, we’ve outlined the milestones people could encounter at this stage. So for example, for the ‘Having Neurosurgery’ stage, the milestones include:

  • pre-op consultation and assessment
  • immediately before surgery
  • recovery after surgery
  • waiting for results after surgery
  • post-op appointment.

As well as letting you know what to expect, we’ve also outlined key areas and ideas to help support you, every step of the way.

This includes:

  • what should happen at this stage
  • good questions to ask clinicians
  • actions you or your family can take to get better care and support
  • useful resources and support services for you at that moment.

So no matter what stage you’re at, you will be informed and prepared for what’s to come.

Read our Step by Step guide

We know that there is a lot of information to take in, and sometimes it can be helpful to talk things through, so don’t hesitate to get in touch with our Support team with any questions. You can call us on 0808 800 0004 or email us at support@thebraintumourcharity.org

We also have a wide range of services to support you through every step of your treatment and care.

Find out more

How we developed the Step by Step guide

In 2019, we worked closely with medical professionals and members of our community to set out the evidenced clinical standards for care of a high grade brain tumour patient.

We had input from Clinical Nurse Specialists, Allied Health Professionals and, most importantly, our community. With their help, we produced our National Brain Tumour Standard of Care which details a typical journey for a patient following a diagnosis of a brain tumour. We’ve based our Step by Step guide on this standard of care.

The definition of best care will continue to improve and evolve, and we will evolve along with it, drawing on evidence and expertise from many different sources, including: The Brain Tumour Charity Patient Guide; the expert information from all our website and healthcare professionals and the experiences from many different people and groups across the community.

If you’d like to be involved in influencing future work and having your voice heard, you can join our Involvement Network. The Involvement Network brings together members of our community who would like to use their experiences to help shape our work and research into brain tumours.

Being part of the Involvement Network is flexible and signing up just involves receiving monthly emails.

Whether it is completing a short survey, reviewing our information or joining a virtual focus group, we would love for you to be part of it.

If you are interested in joining our Involvement Network or have any questions, please email involvement@thebraintumourcharity.org.

Your experience matters, have your say

Everybody affected by a brain tumour should be able to access the best treatment and care wherever they live. To help build a clearer picture of what’s happening across the UK, The Brain Tumour Charity have launched the Improving Brain Tumour Care Surveys.

If you’ve been diagnosed with a brain tumour or care for someone who has, take part and share your experiences of treatment and care.

Take part today