Supporting the

Neuroendocrine Cancer Community

Faces of NCUK, Kevin’s Story

Jul 28, 2021

Name: Kevin

Age: 53

Neuroendocrine Cancer Site: Small Intestine / Liver

Kevin’s Story:

I was diagnosed in early 2021 with primary NET in my small intestine and secondary in my liver after initially attending A&E with suspected gall stones, and as with many people I was experiencing symptoms for a number of years prior to this- IBS, facial flushing, and other symptoms. For me I associated many of my symptoms with the new way of working having been working from home throughout the covid pandemic, although deep down I did suspect something was not quite right but it came as quite a shock to me to be told I have cancer.

The uncertainty hits you like a steam train, there are so many emotions and questions that hit you in waves. After so much soul searching and sadness around telling my family and friends you eventually become to realise you’re not alone – the doctors and nurses give you reassurance and hope, the numerous scans and tests pay dividends towards your physical and emotional well being and you discover communities of people online who share their experiences – it is through this I started to see some light, to see a future, to see hope and to start to come to terms with my condition.

My family and friends (especially my amazing and caring daughter Holly and my wonderful and kind-hearted partner Lainey) have been amazing with their support, this all helps create a positive mindset – to them all I thank you dearly as without you all I could not find the light.

I am 53 years young and I work in a clinical trial environment in the biopharma industry and lots of the terminology around cancer is familiar to me, I never thought I would be using it a personal context. We see many stories of hope and the way we can address unmet medical needs and compassionate needs for our patients. The patient centric mindset is something close to my heart, never more so than now as I am a patient, maybe not for my company but a patient. With reading some of the amazing stories on NCUK give me the drive to tell my story and become involved, I now understand and believe there are other unmet needs with NET (and all cancers) – patient support after diagnosis, greater awareness for early screening and detection. The fight for cancer continues but we are winning and in a small way I am testament to that, I know I am one of the lucky ones as I have a treatment pathway that gives me hope and allows me to continue with a relatively normal life for now and I will cherish this.

I know my life has changed considerably but I have hope now and can focus on what is truly important, that is why I share my story. I intend to become part of the NCUK community and help contribute in raising awareness and support to all patients and families, in any way I can.

Do you have any useful hints and tips that you would like to share?

For me when talking about it helps to never refer to ‘my cancer’ It is my diagnosis but it is always ‘the cancer’ – it does not belong to me.