Patient Stories

I was diagnosed in 2011 at the age of 24, I can honestly say cancer had never entered my mind and it never seemed like something that could happen to me.

My diagnosis of Neuroendocrine Cancer came as a complete shock.  I had been experiencing what the doctors called non-specific symptoms

I was diagnosed a long time ago with MEN1 which meant I was being monitored for a long time.

Although I think I’d been unwell for a while I don’t think I spent as long on the diagnosis path as some others with NETs.

I went from being monitored for MEN1 from the age of 12 so was used to blood tests and scans and seeing specialists but routinely rather than rushed or just told to do something without much explanation.

When I was 16 years old (1990) I was quite sick and always tired, I was always vomiting. Eventually I was diagnosed with glandular fever, the doctors said it was very unusual to have the vomiting I had so they never looked for it.

Like so many others, it took 2 years from my first scans showing tumours to be diagnosed with NETS. It was long, frustrating and physically and emotionally draining not only on me, but also my family.

NETS has hugely impacted my life…going from a full and hectic life, of designing objects and exhibiting our art installation works and jewellery, everything had to stop so I could just focus one day at a time.

My diagnosis with a pancreatic neuroendocrine when I was 36 was out of nowhere… More recently my auntie has been diagnosed, and family discussion have identified a distant cousin as well. This has now had a larger impact on not only myself but my larger family, and made us more aware of our health.