Even so-called “benign” brain tumours can be life-altering or deadly. We're calling on the medical community to stop using the misleading term “benign” and replace it with more accurate, respectful language.

We, the undersigned patients, carers, clinicians, and advocates, urge the healthcare community to retire the word “benign” when describing brain tumours.

The word "benign" implies harmless, minor, or safe—but brain tumours, regardless of grade, are never harmless. Even slow-growing tumours can:

Cause seizures, cognitive and personality changes

Result in permanent disability or death

Require repeated surgery, rehabilitation, or monitoring for life

Lead to profound emotional and psychological trauma

When patients are told they have a “benign” brain tumour, they are often:

Dismissed, misunderstood, or left without support

Denied access to services or benefits

Disbelieved by employers or even loved ones

We ask clinicians and institutions to:

1. Stop using the word “benign” in conversations with patients

2. Use more accurate terms such as “low-grade” or “non-malignant,” with clear explanations

3. Recognise the serious effects of all brain tumours, not just the cancerous ones

My own experience of a 'benign' brain tumour left me with permanent profound hearing loss on one side, invasive tinnitus, balance issues, dizziness, double vision, chronic fatigue and having to relearn to walk and balance again. It dropped a bomb into my life. I can no longer do many of the things I enjoyed in life and have had to learn to massively adapt and overcome many challenges.

The word 'benign' has led to numerous misunderstandings with my family, employers and many others. Yet having met many individuals through The Beyond Recovery Project, I consider myself extremely fortunate.

Language shapes treatment, understanding, and support. It's time we recognised the real impact of brain tumours—no matter their growth rate.

There is no such thing as a benign brain tumour.