Treatment
Brain tumour treatment can involve radiotherapy, chemotherapy, and other therapies, often in combination, or sometimes no treatment at all. This section will help you understand your options, navigate your treatment plan, and know the right questions to ask so you can work effectively with your clinical team.
Taking control
If you’ve been diagnosed with a brain tumour, or someone close to you has, you’ve entered a new world. Suddenly you’re a ‘patient’ or a ‘caregiver’ – neither are roles which you’ve chosen, or for which you are trained. You’ve been flung into uncertainty so that making good decisions about what next becomes instantly more difficult. The world has become a different, unfamiliar and scary place and you can feel totally out of control.
Practical help
You need to know what the best course of action is. Here you’ll find a one stop shop for brain tumour support.
Included, not isolated. Become part of a community.
You don’t have to face this journey alone. We’ve got a huge network of inspiring people who understand life with a brain tumour, waiting to meet you.
Join us at a virtual meet up or a face to face event, or our private Facebook community.
Know Hows
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.
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.
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.
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.
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.
Cannabinoids
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.
Immunotherapy: DCVax®
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.
How to get a second opinion
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.
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.
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.
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.
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.
How to get a caregivers assessment
Under the Care Act 2014 everybody who is caring for someone over the age of 18 with a medical condition or disability is entitled to these assessments. We have produced a Know How which will explain more about carer’s assessments, what they and how you can get one.
Patient guide – diagnosis
My fatigue book
This resource is really important as it enables patients and caregivers living with a brain tumour to understand what is meant by fatigue and to self-manage brain cancer related fatigue.
Proton beam therapy (PBT) guides
These guides offer independent, factual information available on PBT and what it offers, helping you put proton beam therapy in context with respect to other treatments.
My radiotherapy book
If radiotherapy is a potential treatment option for you, or you have recently had radiotherapy, then this resource will help you understand the treatment and feel more in control.
The brain box
The brainstrust brain box is a must have support toolkit for people with a new brain tumour diagnosis and their caregivers. Fully customisable, with resources relevant to your unique situation, the brain box also comes with treats like teabags and self-care items to remind you to take time to look after yourself.
You can join the brain tumour community on Facebook too
Hypnotherapy
When you are living with a brain tumour, or are caring for someone living with a brain tumour, you may find hypnotherapy useful in improving wellbeing in the following areas:
- Anxiety and stress
- Diet and lifestyle
- Resilience, self esteem and confidence
- Pre and post-operative care
- Pain management
- Reduction of side effects from treatment such as nausea, fatigue
Brain tumour treatment information
Decisions will not be easy, and you should be fully involved in them. The more you know the better – this section should answer your questions, and raise more for you to discuss with your clinical team. Do your research so you can be empowered to take control of your treatment and decide what the right path is for you. Ask, ask and ask again.
Latest events
On top of things, not overwhelmed. Regain control.
Just been diagnosed with a brain tumour? Want to find out more about brain tumours? Maybe you would like to offer support, or find out the latest brain cancer news. Whatever the reason, we’d love to hear from you.