Benign is not fine

When you google the word 'Benign' it reads as follows;

benign

adjective 1. GENTLE AND KIND kindly, kind, warm-hearted, good-natured, friendly, warm, affectionate, agreeable, amiable, good-humoured, genial, congenial, cordial, approachable, tender, tender-hearted, soft-hearted, gentle, sympathetic, compassionate, caring, considerate, thoughtful, helpful, well disposed, obliging, accommodating, generous, big-hearted, unselfish, benevolent, gracious, liberal, indulgent

2. MEDICINE (of a disease) not harmful in effect. "a benign condition"

Hmmmm... 'Benign'....

It's a funny word and quite a controversial word when it comes to Brain Tumours

Historically, brain tumours have been classified as malignant or benign (non-malignant). But for the many people who are living with a ‘benign’ tumour, this is far from the case.

These tumours are life-changing.

The impact of my diagnosis has reflected on my relationships but mostly my friendships. Telling people I feel 'fine' or OK seems like a big old fib sometimes but the truth is sometimes to dreary, depressing or tiring to explain and in honesty sometimes I get sick of hearing myself say how tired or ill I feel. Those 2 words ‘Brain Tumour’ come loaded with many preconceptions , and it feels awkward for me to explain all the technicalities, ifs, buts, hows, involved in having a low grade tumour. Then the conversation turns and misconceptions then follow and ,in some cases, I find this incredibly insulting.

There is very little public understanding of the impact these tumours have and few supportive services and information available for those diagnosed with a Non-Malignant Brain Tumour. There is practical support but it is not easy to find and socially patients diagnosed with a non-malignant brain tumour do not have an equal say or opinion than those diagnosed with malignancy.

There is currently a large unmet need for people with non-malignant tumours however people diagnosed with these tumours, referred to as 'benign' face a multitude of challenges not just cognitively and mentally but also the social misinterpretation of the word 'benign'. Recently released brain tumour data shows that 10% of people with a non-malignant brain tumour will die within the first year of being diagnosed.

Since my diagnosis in July 2018 I have had 4 major surgeries, a giant pseudomeningocele and seizures and I also have further surgery due in September to replace my skull plate. On that basis alone I can categorically say benign is not fine. Any brain tumour is a brain tumour no matter the size, location or grade - it is life changing.

No brain tumour is benign, it is just not Cancer.

My prognosis is counted in decades rather than years but I still require the help and support of people around me to understand, to give me time, to be compassionate and understand that this is no easy feat.

The Brainstrust has published a report that shines a light on the experiences that people are having to face with a low grade brain tumour diagnosis. They have made recommendations on what needs to be done for people with a non-malignant brain tumour to have a better life with the disease. The report is incredibly insightful and a worthwhile read.

• The word ‘benign’ should not be used to describe these brain tumours

• There is a need for better public understanding, resources and information to support people with a low grade brain tumour

• More support is needed and it needs to be better structured

• Support needs to be relevant, available at the right time

• There needs to be parity of voice between non-malignant and malignant brain tumour patients and their carers.

These recommendations will be taken forward to drive change so that both the quality of life and care for people who are living with a Non-Malignant Brain Tumour are more relevant, meaningful and supportive.