Patient Stories

The more I read and understood about PRRT I just kept thinking why aren’t I receiving this treatment? I have inoperable and incurable NETs so I wanted something to give me hope.

When I got diagnosed with NETs it literally flipped my world upside down. I went from doing volunteer work, playing football, working 6 days a week and playing on my cars.

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.

I was diagnosed with NETS in May 2017, a biopsy of my ovary revealed the news. It was almost a relief to know why I was experiencing the symptoms I had been…

I was diagnosed with high grade neuroendocrine carcinoma the Friday before Christmas. My prognosis was 6 months.

My role change from working life to a carer was rapid and willingly undertaken even though it was not what I had in mind for our future lives.

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.

It's almost two years now since I was given the diagnosis of Neuroendocrine cancer

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.

Cancer stole our Mum’s right to see her children get married, to meet her grandchildren and to grow old with her husband.

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.

When my GP rang me a few hours after my scan and told me to come in immediately my life changed for ever.

The most helpful thing to me was talking to someone who had been living with NETs for 20 years. Listening to hers and others experiences and tapping into their knowledge was reassuring and comforting.

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. 

For approximately seven years, my health continued to decline and impact on my quality of life, my career goals, my social life and my own self belief. I was diagnosed at age 29, and two days after my diagnosis I found out I was pregnant with my first baby.

I had to quit my high powered job as a CPA and Financial Planner as having NETS as well as Diabetes Type 1 made me a lot slower mentally and physically.