The brain cancer patient experience – why is it so hard to get right?


By Helen Bulbeck 



Image credit: '558597' by rawpixel. CC0 Public Domain via Unsplash.


How do you tread that fine line between telling the truth and nourishing hope? Poor communication leads to worse clinical and psychosocial outcomes, worse control and adherence to treatment; it causes confusion around diagnosis and prognosis meaning high stress levels for everyone. There will always be discomfort when talking about a life limiting, or life changing diagnosis, but having these conversations in a sensitive, honest, and supportive way can be transformative.


Handled well, a patient and their caregiver should understand the uncertainty that a brain tumour diagnosis brings, acknowledge that there will be risks, and know that their inner dialogue is constructive1. Sadly, we know that people are not always told that they have a brain tumour in a supportive way.


It is a complex pathway full of unexpected moments (cancer treatment plans rarely progress linearly) – but even knowing to expect the unexpected can help.


You are the expert on you


After all it is the patient’s road map – their clinical team will give guidance but ultimately the decision is theirs. And this is when resilience, the ability to be agile, is key. The patient is the expert on them – on their social circumstance, their appetite for risk, and their values. The clinician is the expert on diagnosis, treatment options, and outcomes.


Responding to emotion, dealing with stress, managing expectations and nourishing hope when at times the situation is bleak: as a clinician, you can’t do it all. 


Stepping up to the mark - communicating well


As patients and caregivers we also need to step up to the mark. There are some guiding principles:


  • Replace the question ‘are you ok?’ (nobody ever answers this with the whole truth) with ‘what are you struggling with the most?’. The answer may not be clear, but just asking the question can unlock the challenge.
  • Prepare for consultations. Think, talk about what a good outcome would be before the consultation. Tell the clinician what you want to get out of the consultation – revisit this at the end. Summarise next steps and who could help you with these actions2.
  • Let people around you know how they can help3. Be specific. Don’t feel bad about it. If you were in their shoes you’d want to help.
  • Read, lots. Then whatever decision you make will be an informed one. If you don’t want to, ask someone close to you to do it and distil the key messages to you.
  • Ask about clinical trials. Only 24% of patients were asked if they would be interested in research. It is incumbent upon us, the patient community, to ask about trials and how to donate tissue if you’re having surgery.
As friends and family of people with a brain tumour, we need to be considerate and respectful. Some tips we have heard on our ten year journey supporting people with a brain tumour include:
  • Saying ‘I don’t know what to say’ is fine.
  • Make specific offers of help: not 'how can I help' but, 'I can help you with transport', or 'can I cook you a meal'. It’s okay to offer more than once.
  • If you know someone who has died from a brain tumour, we don't always wish to know.
  • Sometimes, talking about something else helps.
  • It's good to laugh.
  • Many people with a brain tumour decide to reduce sugar intake: show support any dietary or lifestyle decisions.
If a clinician asks ‘what do you need to have an improved experience?’ you need to know what to say. Talk to us – we can help you articulate it.


1Difficult conversations brainstrust, version 2: September 2016 

2Who’s Who in Your Clinical Team brainstrust. Version 2.2: September 2015.

3Walking a mile in our shoes: Tips from a brain tumour patient’s carer brainstrust 2013

Helen Bulbeck is Director of Services and Policy at brainstrust.
You can share your tips on dealing with the brain cancer patients experience on brainstrust on their Facebook
This article is based on themes from the Oxford Textbook of Communication in Oncology and Palliative Care, 2nd Edition (OUP, 2017). 
For previous articles, visit our Article Archive.


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