Low and uncertain grade brain tumours

Understanding low-grade and uncertain-grade brain tumours

Our ‘low-or-no-grade’ theme for Brain Tumour Awareness Month focuses on brain tumours classified as low grade or of uncertain grade, and how these diagnoses affect everyday life.

The grading of brain tumours is complex and can be very confusing, and sometimes a tumour can’t even be given a grade. Terminology used by professionals doesn’t always match what people experience in real life, and phrases like ‘low grade’ can feel unclear or even misleading.

So, we want to uncover the real impact that these brain tumours have, from the challenges of treatment and recovery, to the way others perceive the diagnosis. We aim to make this complex field better understood, highlight the experiences of people affected and ensure that support and awareness are priorities.

What do ‘low grade’ and ‘uncertain grade’ mean?

The grading system for brain tumours describes the type and behaviour of the tumour, but this clinical definition doesn’t always reflect the level of impact it may have on someone’s life.

Low-grade tumours usually grow more slowly than high-grade tumours, and the cells appear less aggressive under a microscope. However, some low-grade brain tumours, like low-grade gliomas (grade 2), can still be cancerous.

Sometimes it’s not possible to assign a grade to a tumour, and the grade is therefore considered uncertain.

Even low-grade or uncertain-grade brain tumours that are non-cancerous can affect important brain functions, require surgery or ongoing treatment and have long-term consequences. The terminology can be confusing, so it’s important to look beyond the label and understand its practical and emotional impact.

Does a low-grade brain tumour mean you have cancer?

Not always. Some low-grade brain tumours, such as low-grade gliomas (grade 2), are cancerous, while others are not.

‘Low grade’ refers to how the tumour cells look under a microscope and the speed with which they are likely to grow.

Whether or not a low-grade tumour is cancerous, the most important thing is to understand how it affects you personally and to get the right support for your situation.

Why do some people not know the grade of their brain tumour?

Sometimes a brain tumour can’t be assigned a grade and may be described as ‘uncertain’ or ‘indeterminate’.

This can happen for several reasons:

• The tumour is rare or unusual, so it doesn’t fit neatly into existing grading categories.
• The tumour is in a position which makes it too risky to perform a biopsy.
• There isn’t enough information from tests or biopsy samples to assign a grade.
• The tumour behaves in a way that doesn’t match the standard low or high-grade classifications.

When a tumour’s grade is unknown, it may still require treatment, have long-term impacts on daily life, and it can be particularly hard to cope with the uncertainty of this situation.

What are the hidden impacts on life?

Even when a brain tumour is classified as low grade or uncertain, its effects can be significant and are not always visible.

Some of the hidden impacts include:

• Cognitive changes — difficulties with memory, concentration, or decision-making.
• Mental health and emotional challenges — anxiety, low mood, or stress related to uncertainty about the future.
• Fatigue and physical limitations — ongoing tiredness, weakness, or coordination issues.
• Medication or treatment effects — side effects from surgery, radiotherapy, or medications can last long-term.
• Changes in daily life — work, education, hobbies and social life may be affected.
• Impact on relationships — family, friends, and caregivers may also experience emotional and practical strain.
• Feeling misunderstood or overlooked — because the tumour is low grade or uncertain grade, others may underestimate the challenges faced.

Even though the tumour may grow slowly or appear less aggressive, these hidden impacts often make a real difference to quality of life, and can be life-changing or life-limiting.

Why do some people feel their needs are overlooked or unmet?

When a tumour is described as low grade or uncertain grade, other people — including sometimes medical professionals, friends, or family — may assume it isn’t serious.

This can make it harder for the individual to access the support, understanding and practical help they need. But even when a tumour grows slowly, the impact can be significant due to its position in or next to the brain.

Being overlooked or misunderstood can add emotional strain, isolation and frustration, which is why raising awareness and prioritising specific support for people with low-grade or uncertain-grade brain tumours is so important.

What support might be needed?

People with low-grade or uncertain-grade brain tumours often need ongoing support across many areas of life, not just at the time of diagnosis or treatment.

This can include:

• Emotional support — including counselling and peer support groups
• Practical guidance — advice on finances, work, education and daily living
• Family support — helping family and friends navigate the emotional and practical impact
• Medical support — access to specialist nurses and regular monitoring

Because these brain tumours often require long-term monitoring and care, support may be needed for many years. Accessing the right resources and being understood by clinicians, employers and family can make a significant difference to quality of life.

What do we want people to understand?

A brain tumour diagnosis changes lives, whatever the grade. Even slow-growing brain tumours can have a profound impact on daily life, health and wellbeing.

People living with low-grade or uncertain-grade brain tumours deserve understanding, compassion and ongoing support from everyone around them, including clinicians, colleagues, friends and family members. Recognising the hidden challenges they face helps ensure they are not overlooked or misunderstood.

Listening to and valuing their experiences enables healthcare teams, colleagues and loved ones to provide the right practical and emotional long-term support, helping people to manage their brain tumour, cope with changes and maintain quality of life. Ultimately, understanding and support from all areas of life are key to ensuring that nobody feels isolated or forgotten.

For further in-depth information on low-grade gliomas, the Astro Brain Tumour Fund is the UK charity which focuses purely on low-grade glioma (astrocytoma, oligodendroglioma and ependymoma grades 1 and 2) brain tumours.