My two most popular posts to date are Nutrition Blogs 1 and 2 so I guess this is a topic you guys like? Lucky for me I’m pushing at an open door as nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients. It is also a key factor in maintaining a decent quality of life.
When I first indicated this series was under construction, a few people got quite excited anticipating me to produce advice on what to eat etc. However, that was never my intention. What people should or should not eat is such a varied problem (or solution?) and there are already several ‘what to or not to eat’ publications/articles out there aimed at NET patients; some more up to date than others (all I would say is to interpret them carefully). Rather I want to look at what causes the nutritional related issues and to a certain extent, try to work out whether these issues are caused by either treatment or an associated syndrome leaving fellow patients to make up their own minds whether this applies to them or not.
The first two blogs were Blog 1 – Vitamin and Mineral Challenges and Blog 2 – Malabsorption. This particular blog is not as ‘clear cut’ or simple as the first two and I suggest you read Blogs 1 and 2 first if you are not familiar with these issues. Again I’m grateful to Tara Whyand (NET Specialist Dietician from Royal Free London) for some of the input below.
When I first met my surgeon, I found his favourite word was ‘Gut’. Like me before diagnosis, many of you will have heard or used the word but in an intentionally non-medical context, e.g. guts (bravery), ‘gut feeling’ or ‘gut instinct’ (intuition). I’ll return to that theme later but it’s no surprise why some scientists refer to our gut as a ‘second brain’.
I always thought the gut referred to just the ‘belly’ area but in medical parlance, the gut has a much bigger geography. It is sometimes used interchangeably with the term Gastrointestinal (GI) Tract and stretches from the throat to the anus and is responsible (in the most general terms) for food intake, digestion/absorption, waste processing and finally waste ejection. NET patients should be familiar with the terms ‘foregut’, ‘midgut’ and ‘hindgut’ which are sometimes used to define the embryological origin of Neuroendocrine primary tumours, although the boundaries and constituent parts seem to vary from site to site.
This blog is generally about ‘gut health’ but I might stray beyond that at times. However, I must warn you this is an area still under scientific study and investigation. I found a mountain of information out there and it’s all very complex! However, with the help of Tara, I focussed and found a few pieces of information which may be useful to NET Cancer patients.
One of the first pieces of advice I was given after my initial surgery was to take probiotics – to keep up my stocks of ‘good’ bacteria. I started with the liquid drinks you can buy in most supermarkets and supplemented this by eating bioactive yoghurt. I didn’t really notice any difference from either but the yoghurt was nice to eat! Tara Whyand then confirmed this advice when I first met her in 2012 at a NET Patient Foundation conference. In 2013 when I started looking for anew normal, I decided to take a high-grade daily capsule containing 5 billion friendly bacteria. Within weeks I was noticing a difference in bowel motility although I confess to changing other elements of my lifestyle at the same time (more on that later). Nonetheless, I sense probiotics are helping and I won’t be reducing or stopping them any time soon. If you look at several NET specific dietician/nutrition presentations, most appear to promote the use of probiotics for NET patients. In addition to Tara, there is a useful NET specialist contact on the website of Caring for Carcinoid who recommends probiotics greater than 2 billion to help in tackling diarrhea. CNETS Canada‘s NET specialist contact also recommends them.
Why might probiotics be important? One of the terms you find in this complex area is the ‘human gut microbiota’, sometimes known as ‘gut flora’. Our ‘gut’ harbours a complex community of over 100 trillion microbial cells, approx 3% of our body mass! The human gut microbiota is known to have an influence on every part of our body (including the brain…..) and disruption of this ‘community’ has been linked with several gastrointestinal conditions such as Inflammatory Bowel Disease (IBD) and obesity.
Probiotics can help keep the balance and mix of bacteria stable within the gut which can be affected by many different factors, including antibiotics, aging, illnesses (such as IBD), following infective gastroenteritis and (of interest to NET patients) after cancer treatment or gastrointestinal surgery. {1} Incidentally, the reference here is authored by Tara Whyand and Professor Martyn Caplin (a Neuroendocrine Tumour expert who also happens to be a Gastroenterologist). Useful reading if you have any of the conditions in the report, had gut surgery or like me you are a total geek :-)
I’d also like to draw your attention to another interesting area of research into something called Small Intestinal Bacterial Overgrowth (SIBO) which Tara is currently researching. (please note Tara blogs for a commercial organisation so I add this disclaimer – I reference her blogs for their intellectual content rather than any product which is associated with the commercial organisation hosting the blogs. I would also add that her blogs are all evidence based and referenced accordingly)
SIBO is a condition where the small intestine is populated by an abnormal amount and/or types of bacteria. It follows that probiotics may be useful in combatting this. I found some really interesting statements in one of Tara’s blogs e.g. “……low FODMAP diets are not a long-term solution however as it doesn’t correct the bacterial imbalance and most of the foods to be avoided are healthy. For a longer term solution we need to add bacteria back in – probiotics.” {2}. See also some research on potential issues for people who use Proton Pump Inhibitors (PPI) and take Non-steroidal anti-inflammatory drugs (NSAID’S) including ibuprofen – {3}
So how does SIBO potentially and specifically affect NET patients? It can be caused or exacerbated by surgery to stomach, duodenum, pancreas or via whipples, poorly controlled diabetes, the long-term use of omeprazole and lansoprazole (PPIs); and possibly antibiotics. Symptoms vary for everyone from watery diarrhoea suddenly starting 20 times a day to just bloating and wind in both directions, to nothing at all. Some people also lose weight and there is risk ofvitamin and mineral deficiency.
There is a test to check this called the Hydrogen breath test. This test uses lactulose ingestion to measure the hydrogen in the breath. If SIBO is diagnosed, treatment is normally via antibiotics. Interestingly, advice is to leave a 2 hour gap between taking probiotics and antibiotics and a high dose multi-strain probiotic should be applied. There is also an indicative test via blood serum checks. If you have low B12 and high folate (B9), this could also be an indication of SIBO. This should be easy to check as B9 and B12 are normally tested together when either is ordered. If SIBO is left untreated, bacterial imbalance (dysbiosis) can lead to long-term inflammation and other gastrointestinal problems.
Now all of that is very interesting when you consider some of the day-to-day problems faced by NET patients. To me, this sounds like another good reason to take regular high strength probiotics, which it would seem, may also be working to resolve an issue which is causing or contributing to diarrhoea. Additionally, good advice on a 2 hour gap between taking antibiotics and probiotics – who knew?
I researched beyond Tara’s advice and also found numerous mentions of very familiar looking SIBO symptoms which all look like classic NET Cancer problems and IBS. You will like this presentation from the Royal Marsden Hospital which I found very interesting – particularly the bit about the prevalence of patients who have had an “abdominal surgery” or an “Ileocaecal valve resection”. I guess that would include many NET patients?
This blog could have been 10 x longer! I didn’t even get to the bit about the relationship between the gut and the brain – perhaps another day?
Thanks for reading
Ronny
Disclaimer
My Diagnosis and Treatment History
References:
{1} Review of the Evidence for the Use of Probiotics in Gastrointestinal Disorders –CLICK HERE
{2} Gut Bacteria Reach to Our Intake – CLICK HERE
{3} Acid suppressing drugs and bacterial overgrowth – CLICK HERE
Other useful links which have an association to this blog:
{a} Read a Nutrition Booklet co-authored by Tara – CLICK HERE
{b} Follow Tara on Twitter – CLICK HERE
{c} Watch a video of Tara presenting to a group of NET Patients – CLICK HERE
{d} Now Watch Tara answering the Q&A from patients – I enjoyed this – NET patients are very inquisitive! CLICK HERE
