Name: Andrew
Neuroendocrine Cancer Site: Small Bowel
Diagnosed: October 2024
Neuroendocrine Cancer Hospital: Basingstoke and North Hampshire Hospital
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Andrew’s Story
I work for a small engineering distribution company, and my job involves both office and warehouse work. Away from work, I used to play football, golf, hockey, and badminton when I was younger, but as time went on, golf became my best option – together with walks with friends and meals out. Something I’m trying to get back to slowly but surely after surgery.
My neuroendocrine cancer diagnosis all started very quietly – just a stomach cramp here and there, back in August 2024.
They came about once a month, lasting only a day. Annoying, but nothing alarming. I chalked it up to something I ate or maybe stress. But by October, the cramps became more frequent – once a week, lasting two days at a time. That’s when I knew something wasn’t right.
I went through the usual rounds: blood tests, scans, even a camera down the throat. Everything came back clear. No answers, just more questions. Then, strangely, after Christmas, the cramps stopped altogether. But I didn’t stop researching possible causes, and I kept pushing my GP for more specific answers. In fact, it was my GP who signposted me to the Neuroendocrine Cancer UK website to help with my understanding of this disease.
An ultrasound didn’t reveal anything, but a second ultrasound scan showed something suspicious. Luckily, I was sent to Southampton NET Centre of Excellence for a Gallium-68 scan in February 2025, and it finally revealed the truth: there was indeed a tumour in my small intestine which, had it been left much longer, would have been highly likely to cause a bowel obstruction. It had already spread to a nearby lymph node. (link to small bowel as primary site).
Things moved quickly, and in April 2025, I had surgery under the excellent care of Dr Fenella Welsh. She removed the tumour along with 52 centimetres of my small intestine, and I was told the resection went well. The biopsy showed the tumour was a Grade 1, and 2 out of 25 lymph nodes were infected. My KI67% index was reported as only 1% and no necrosis was present, so I feel very fortunate.
But now, of course, like many reading this, I’m living with cancer. No follow-up treatment is required at this stage – just regular CT scans every six months. The first one is scheduled for October 2025. And I’m not on the monthly injections for now. I’m taking each scan as it comes, one step at a time.
I felt I was left to myself to recover from my surgery, but I really did find gentle walks helped me each day. It took more time to get back to any sort of normal diet, and even after 4 months, I wouldn’t describe things as normal. I get bloated, and there’s a lot of noise, but my team assures me this is ok at this stage. My scar tissue also itches (you can if you wish, gently rub Bio Oil on scars, apparently). I also find that phoning my NET Nurses is more helpful than bothering my GP, as they know more about this whole process.
I also found that being open and telling family and friends, and even wider acquaintances, made things easier for me after treatment. I realise not everyone will want to do this, but it helped me. I also work hard to keep a positive mindset, often telling myself how much worse things could have been. I like to talk and share with people, it’s a sort of ‘download’ for me, rather than asking ‘why me? Or is this ‘my fault?’ The people around me have been very supportive, and I have tremendous gratitude for that.
I think the biggest single lesson I’ve learned is to trust myself and my body.
Don’t ignore symptoms if you don’t feel right, and keep pushing for investigations. I’ve used many of the Neuroendocrine Cancer UK services to help educate myself, and I’ll continue to do this to ensure I keep myself up to date – especially with any new treatment options coming down the line for the future.
Andrew
Written August 2025