Name: Paul 
Neuroendocrine Cancer Site: Small Bowel Primary, Liver Metastases

Diagnosis: November 2022

Neuroendocrine Cancer Hospital: Queen Elizabeth, Birmingham

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Paul’s Story

I suspect my route to diagnosis might be familiar to many here. After years of vague symptoms (maybe 7 or 8 years), my No. 1 issue was very strong flushes after just a sip of alcohol, which numerous GPs put down to an allergic reaction. A Locum GP eventually decided to send me for a CT scan. Then in 2023, I had an MRI scan and a PET scan. 
Lo and behold, in November 2022, it showed tumours in both my small bowel and liver, and I quickly embarked on a 4-weekly cycle of Lanreotide injections at Kidderminster Hospital and Treatment Centre (managed by the Oncology team at Worcester Royal Hospital). This remains my only ongoing treatment for now, though I am follow-up regularly, every 3 months, by the lovely team at Worcester Royal.  
 
Following this quick start, my local hospital consulted with Queen Elizabeth Hospital Birmingham, which is one of the UK’s NET Centres of Excellence, and it was agreed that surgery under Mr Sam Ford was a viable option.  
In January 2024, I met with the GI Surgeon at Queen Elizabeth and underwent a small bowel resection and had 5 NETs plus some lymph nodes removed. All appeared well, and I was able to restart gently running – a sport I love – around six weeks after my surgery. Unfortunately, while enjoying a short break in Devon, I became ill and ended up being taken by ambulance to Torquay Intensive Care Unit. 
The surgeons had me on emergency surgical watch (including the required Octreotide protocol infusion, which was impressive), though they were obviously very wary of re-operating so soon. Luckily, and in agreement with the Queen Elizabeth team, they blue-lighted me back to Birmingham, where I remained for 77 days. Trust me, I counted them all! 
During that time, I suffered from severe bouts of infection and sepsis, requiring continuous IV drips of heavy antibiotics to help my body fight the infection. Halfway into my stay, the surgeons operated to help drain the infection into a stomach bag. On discharge, I was in the care of local NHS services but continued to have recurring infections throughout 2024, which became increasingly difficult to manage. 
Eventually, my surgeon determined that there was no alternative but to re-operate and in January 2025, exactly one year after the first resection, I underwent surgery to remove the mass of infected material which, to the surprise of the team contained another small NET. A further section of small bowel, a portion of large bowel, lymph nodes, and my appendix were removed.  
 The good news is that my recovery has, so far, gone smoothly, and I am now under the care of the liver team at the Queen Elizabeth, who are currently carrying out scans with a view to planning a liver resection for the NETs in my liver. 
I’ve always been quite fit, never smoked, and was only a modest drinker (given the diagnosis and the reaction that happened, I haven’t touched alcohol at all since November 2022, thanks heavens for 0.0% Guinness!). 
I have a good diet and have adapted relatively easily to the ‘new norm’ of how my bowels and digestive system work now. It’s certainly not all been plain sailing, but I feel I’m on the right road now. And I could not have gotten through all this without the love and support of my family and my close friends. Walking with friends has helped me enormously. On Thursdays, we usually hike around 10-15 miles together, and I’m very proud to say that, at the moment, I can still complete them, and I know it’s so good for my mind. 
Paul 
Written June 2025