Supporting the

Neuroendocrine Cancer Community

by Karen Edwards

The last 6 months for me have been a rollercoaster of health and emotions. I have had IBS for years and it has been unpleasant, painful, unbearable and sometimes absolutely excruciating.

The weekend before Christmas 2021 was the worst and I put it down to work and Christmas stress. After 4 days of throwing as many painkillers down my neck as possible, hubby dragged me to the local A&E in South Wales where I was eventually admitted (A&E long waiting times, short staffed – you know the drill).


Scans and x-rays were taken and I honestly thought it would just be the usual IBS and/or wind. It wasn’t – there was a blockage in my bowel and the surgeon decided to operate as soon as possible. I was given a leaflet with “cancer” on it and I remember looking at him and saying, “no, I don’t think so – lightning doesn’t strike twice.”


I’d had a bleed on the brain in 2015 and was convinced that was all the health bad luck I’d had. He also mentioned that the scans had shown something up on my liver but he couldn’t confirm what it was at that time. Anyway – he operated and removed some of my bowel – the bit in between the large intestine and the small intestine and I now have a beautiful scar as the laparoscopy didn’t work and I had to be opened up.
Off it went to be tested and I went home a few days later.


Covid hit the pathology lab so I had to wait 5 weeks for the results. I am a very practical person but my mind went between “cancer” and “blockage”. I was utterly convinced it wasn’t cancer and couldn’t even say the word. I went back to work (in hindsight far too soon) as I was worried about sick leave and the possibility of having another operation on my liver in the near future.


Those were very long weeks and whenever I rang my Multi-Disciplinary Team (MDT) they had heard…………nothing. No news is good news etc. so I carried on. Then the call came. The nurse told me that I had neuroendocrine tumours in my bowel (now removed) and that I would be having a meeting with specialists to discuss what would happen next. To be honest that was a blur and I was still sure I didn’t have cancer as no-one had said “Karen, you have cancer”.

I had my meeting and it was all explained there. Yes I have cancer. It is a rare form of cancer and very slow growing and people live with it but there would be more tests (one in London) to see exactly what we were up against.


I have since learned a lot. NETS is one of those things that you learn much more about as you go along. To be honest it wasn’t that much of a shock – medically trained people do not use the word “cancer” lightly. The worst part was trying to explain it to people especially my managers at work. In a nutshell they don’t get it. At one point I truly think they didn’t even believe I have cancer as I wasn’t having chemotherapy, didn’t look thin and frail and still have all my hair.

My mental health has really suffered as I am an incredibly honest person and to be disbelieved hurt more than the diagnosis. My family and friends have been amazing (although I think my mother still expects me to drop dead at any second 🙂 ).

As I said – I am a practical person and tend to get on with things. However, I have had dark moments and cried buckets.

All I can suggest is take your time. Talk to your MDT. Join the Neuroendocrine Cancer UK Support Facebook group, use the Helpline if you need to – there is nothing they have not heard before already and are very supportive.

Click here for further information about Neuroendocrine Cancer of the Large Bowel and Small Bowel.