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Brain Tumour Awareness Month Blog

Shona Floyd 4 Mar 2024

Are you aware brain tumours are statistically the largest cancer killer of those aged 40 and under. This year around 12,000 individuals will be diagnosed - this includes 500 children and young adults, that is 33 people a day, every day. Of these, 5000 will die. Brain tumours significantly reduce life expectancy and account for 27yrs  of life lost.

There are many early signs and symptoms across the life course. It is worth remembering these can be very subtle and transient. They can also be present in those patients presenting with metastatic brain tumours, some of these symptoms are below: 

  • seizures (emergency presentation)
  • stroke like symptoms (emergency)
  • neglect / inattention
  • speech problems
  • visual problems or auras
  • depression, personality changes
  • transient weakness +/- loss of sensation
  • odd smells (burning)
  • patients repeatedly not feeling right.

From a disease perspective these are areas where you may find brain tumours: 

  • neurological
  • other primary cancers presenting as metastatic disease
  • rarer cancers
  • rarer diseases.  

The World Health Organization classify brain tumours as: Low Grade (1&2) and High Grade (3&4). Tumours graded 1 & 2 can (& do) mutate to grades 3 &4, it can never be assumed because a tumour is classified as low grade it will stay as low grade. For the last 6.5yrs I’ve been building relationships with all 30 UK Adult Neurosciences centres. The overarching concerns coming back from the nurses I work with, are the often-hidden needs of our patient group. These needs range from a loss of autonomy, financial implications due to work issues, loss of driving licenses, fatigue management, emotional support and healthy coping strategies, all hidden and not obvious to see. A holistic person-centred approach should mean as nurses we shouldn't miss these concerns.

However, as a charity our support teams hear on an almost daily basis how many patients feel they aren’t getting supported in one or more of these areas. Care needs for those diagnosed with a brain tumour are frequently very different when compared to patients with other cancers. This is due to the location of the tumours, these cancers and the impact they have on both the cogitative and physical functions of the patient.

Our Improving Brain Tumour Care Surveys 2020 – 2022 show:

  • 37% said their prognosis wasn’t explained in a way they understood.
  • 42% didn’t have written information about their tumour type.
  • 59% needed more help understanding their brain tumour and what to expect.
  • 49% didn’t have written information about their treatment options.
  • 58% needed more help dealing with the emotional effects.
  • 57% needed more help dealing with the symptoms and side effects of their tumour.
  • 65% were not told about rehabilitation pathways.
  • 39% were not signposted to external charities.

My role is rewarding, and challenging, I work in this amazing field using my nursing background, but now with loo and lunch breaks whenever I want. Our Neuro HCP community is brilliant, diverse and I’m lucky to be able to work with them. If there is anything you need, please do reach out.

You may find the following resources useful:

Shona Floyd

Shona Floyd

Neuroscience Forum Committee Link Nurse

Healthcare Engagement Manager

Previously I worked as an Adult trained nurse, I now work as the main link between the Third Sector and Primary/Secondary Care centres. Primarily working with those who specialise in Neuro-Oncology or with centres who have Neuro-Oncology patients.

Page last updated - 05/03/2024