Name: Karen

Neuroendocrine Cancer Site: Small Bowel
Neuroendocrine Cancer Specialist Hospital: University Hospital of Wales
Diagnosed: May 2024

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Karen’s Story

In May 2024, after going into A&E in extreme abdominal pain, I was told I had secondary cancer (or metastases) in my liver, which had come from my primary site.  After numerous tests and scans, the primary was found in the small bowel. I had a small bowel resection, and my ovaries were removed (as it was discovered that it had spread there too), 50% of my liver, together with two large tumours, as well as my gall bladder, to reduce the risk of gallstones.  I was fortunate to have the care of an amazing medical team – including a cardiologist, gastroenterologist, bowel specialist, and even a gynaecologist – who got me through to surgery within a few months.  Small ‘well-behaved’ tumours remain in my liver today, slow-growing and stable. 

When Food Became the Hardest Part

However, in the weeks/months following surgery, I battled with food and my new eating regime.  I experienced terrible bloating, painful reflux and wind (especially, it seemed, after eating broccoli, which created the most awful backache), a stomach that didn’t know what quiet meant, let alone silence, with its gurgles and rumblings and bad, stinky stools.   
It was tiring thinking about food all the time, and what to eat.  I had struggled a lot over the years with dietary issues (it seems it was probably the NETs all along), but I had at least got to a place where I could control it by diet.  Suddenly, much of what I had been doing wasn’t advisable – wholemeal bread, eating my veg like cabbage, Brussel sprouts, etc., all these now seemed to make things worse.  And potatoes!  Who would have thought the humble spud could create such agony?  And oh, my goodness, the bloating! I needed help. 

Finding Help Through a NET Dietician

At one of my Consultant appointments, I asked if I could see a Dietician – and it was remarkably easy to get time with her.  What a revelation!  The dietician I saw was part of the NETs team and so, as well as being very knowledgeable about food and diet, she completely understood NETs, with the bloating, gurgling, trapped wind, etc.  It was so refreshing and helpful.   
I was given dietary sheets with lists of foods to have, to avoid, and those to have a break from, but to try moderately over time to see how my body reacted.  The Dietician pointed out that individuals react differently to different foods; for some foods, there is a common reaction, but there are other foods to which people react differently.  I discovered why the humble potato was giving me so much trouble – the Dietician explained about removing the skin from many of the foods I ate, the potato being one.  Since doing that, I haven’t had so much trouble with it (though I grieve not being able to enjoy a lovely crispy skin on a jacket potato).  Just eating the florets from broccoli, rather than any of the stem, was another revelation.  I was advised to have a high-protein, low-fat and low-fibre diet – it has been amazing.  The Dietician also prescribed Creon for me, as I was getting Steatorrhea, and this has also helped with bloating and gurgling. 

Relearning How to Eat

I am now able to adapt recipes and make my own meals, knowing what to include and to exclude, and what to swap with other ingredients.  It has made such a difference to my life.  I had gotten to the point where food was just a stress and really unexciting, I ate because I had to, not with any enjoyment of food.  Now I can put together meals I actually enjoy.  I do miss some things, but at least I can come up with alternatives.  I am now able to reintroduce Brussel sprouts every so often, too.  
Speaking with a Dietician has been a game-changer for me.  And I can ask to speak with her at any time I need to.  I have seen her two or three times now, and she has helped me tweak things as I grow more confident in managing my diet.  I would highly recommend requesting a referral to a Dietician if you need to; one within your NETs team is extremely helpful as they come with an understanding of NETs. I would also like to thank a special friend, too, who is now working through my diet sheets and coming up with new recipes for me. It’s all been rather transformative.  Please don’t suffer in silence if any of my story resonates. 
Update: Jan 2026 –  Recently, I started getting really bad back ache in the middle to upper back, just below in between my shoulder blades. I was not able to get a GP appointment and was given an appointment to see the resident paramedic at my GP surgery. He concluded I have referred pain from acid reflux due to a build up of excess protein. He has prescribed Gavascon to be taken after every meal and before bed and told me I’ll have to do this all the time now. I’ll report back and let you know how I get on.