“[This is] quite a difficult subject to talk about – because what works for one person might not work for another – we’re all very individual…”
Diarrhoea is a symptom that often occurs in several types of NETs (which you may also hear referred to as carcinoid tumours, GI-NETs, GEP-NETS, pancreatic NETs and lung NETs). Chronic diarrhoea can cause dehydration and weight loss. So speak to your doctor about any diarrhoea you experience. Always ask them before you take any medications for diarrhoea since these may interact with some NETs treatments.
“I don’t eat meat any more, so I am vegetarian, and drink very less alcohol – food is more important for me than before”
“I decided I would cut out alcohol very early on… it’s one of the things NET patients are told to avoid”
“Trial and error – you’ll find out what upsets you doesn’t upset anybody else – a lot of other patients can have lots of chocolate, I can’t…”
As someone living with NETs, you may lose your appetite if you’re feeling unwell due to various symptoms and treatment side effects. This can also lead to weight loss.
Although you may not feel like eating, remember that getting good nutrition and keeping a healthy weight are important parts of your recovery. Eating well can also help you to cope better physically and emotionally with the effects of NETs cancer and cancer treatment.
Ask your doctor for advice about ways to relieve other gastrointestinal symptoms you may have, such as nausea, vomiting, constipation or stomach pain.
Speak to your doctor before you try any dietary supplements, such as vitamins, minerals, herbs, or products made from plants (botanicals). Even ‘natural’ supplements can sometimes have harmful effects on your tumours and interact with cancer treatments.
Avoid products that claim to be ‘miracle cures,’ ‘breakthroughs,’ or ‘new discoveries,’ for NETs.
Also avoid those products that claim to have benefits but no side effects or claim to be based on a ‘secret ingredient’ or method. Such claims are almost always fake, and the product may contain harmful substances, drugs or contaminants.
While your doctor might not know all the details about these products, they may be able to keep you from making a dangerous mistake.
Supplements that contain live bacteria and yeasts that are good for your gastrointestinal (digestive) system are called probiotics. Some people living with NETs may find these helpful to take.
You can find probiotic supplements available for sale in most supermarkets and include yoghurt drinks that contain the ‘good’ bacteria lactobacillus or bifidobacterium.
These ‘good’ bacteria are present in some dairy products and can help people with irritable bowel syndrome as well as NETs.
It is not known exactly how probiotic supplements help people with NETs. One theory is that they might help because people with NETs have excess ‘bad’ bacteria growing in the gut and probiotics restore the balance of good versus bad bacteria.
Excess ‘bad’ bacteria in the gut is a condition known as small intestinal bacterial overgrowth or ‘SIBO’ and is usually treated with antibiotics. Your doctor can perform a simple breath test to see if you have this.
Patient support groups for NETs can often provide social and emotional support
Learn about carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs
View a list of specialist NETs clinics and NETs hospital units in Europe