Supporting the

Neuroendocrine Cancer Community

Hi my name is Angie and 14 years ago my mam was diagnosed with a neuroendocrine tumour (NET) and the only change was a loss of 4lbs in weight but I knew there was something wrong. The GP examined her and she could feel the liver tumour. It all snow balled from then, scans, blood tests, biopsy and more scans and the only thing we were told was it was cancer (unknown primary) with liver metastases.

Weeks went by before we eventually got the diagnosis of NET. We were given a NHS printed information sheet and told to go home; they would see us in 6 months unless there were symptoms.

Watch and wait!!!  WOW!!

There was a lovely NET specialist nurse who only worked 3 days a week and information was limited.

So you can imagine how we were feeling, angry, frustrated and alone.

Being a daughter/nurse I needed knowledge of this cancer to support my mam and family. We were very frightened of the unknown.

But then I came across NCUK….Knowledge, information and support the 3 things we as a family were craving.

Jump 14 years later and I have been a Neuroendocrine Clinical Nurse Specialist for 6 years. I come with knowledge, information and support and empathy to my patients as I know what it’s like to walk in their shoes.

NCUK have been with me for the last 14 years and with the support and knowledge they share I know how more difficult those early days would have been and to them I say a big THANK YOU.

So when I got this job the first thing I wanted to achieve was to a set up a support group as I know how important it is to meet people, to give people the knowledge and share experiences. The same reason I want to be a part of the faces of Neuroendocrine Campaign so hopefully we can keep supporting each other and to know that you are not alone.