Patient Stories

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.

NETs tipped me upside down, it stopped me in my tracks! Years of getting sicker and sicker, and nobody understanding what was wrong with me.

Honestly, pre-NETs now seems like another life for me.  The biggest change is becoming a diabetic as a result of tumours on my pancreas and it therefore being removed.

Keep a journal and or diary to write all of the very many questions that will pop into your mind. Take this to every medical appointment and where possible also take a “buddy” to take notes so you can focus & not stress about forgetting valuable information. 

Grant Mundell Being diagnosed with a pNET and MEN1 has had a huge impact on my life and that of my

For years I had felt unwell and not my normal self. I was a confident, happy go-getter who had become tired, anxious and nervous without cause and ultimately developed an extra short fuse.

NETs has totally changed my life. I was a bit of a gym junkie before and now have had to cancel my membership due to pain and fatigue. This has been the hardest thing to deal with.

It is impossible to explain to you in words how a person can be perfectly healthy one minute, then violently ill barely half an hour later, then admitted to Hospital within two. But that is exactly what happened to me…

Although feeling very disheartened at my future after diagnosis, something changed in the way I approached it as time has gone on. I decided that I was not going to be defined by this condition. It is a small part of me; I am NOT part of it.

On 9th July 2012 out of the blue I woke up with my heart racing, skipping, in a cold sweat, chronic stabbing pains with blood pouring out of me.

I was first diagnosed with NET’s in October 2010 after the discovery of a mass in my pancreas.  I had been unwell and lived with symptoms for about 4 years and for a while I actually thought that I might have ovarian cancer as the symptoms were very similar (according to the adverts on TV).

It was New Years Eve 2010 when this ultrasound showed I had spots on my liver and a follow up CT scan that day showed a mass on my pancreas. While people around me prepared for new years eve celebrations I was trying to imagine how my boys would live without me and how my wonderful husband would cope with it all.

Our eldest daughter Tayla had an ultrasound, MRI and CAT scan just days before, all which detected a mass in her abdomen, this warranted further investigation by the hospital. Even more bizarre was the fact that she had found this lump herself.