Neuroendocrine Cancer Nutrition Series Part 4 – Food for Thought?

Food for thought

Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer.  In the previous parts of this series I focussed on the following:

Article 1 – Vitamin and Mineral Challenges.   This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietician.  This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.

Article 2 – Malabsorption.  Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.

Article 3 – ‘Gut Health’.  This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as a consequence of cancer treatment. Also discusses probiotics.  Input from Tara Whyand.

Article 5 – ‘Pancreatic Enzyme Replacement Therapy’. The role of PERT (Creon etc) in helping NET Patients. Input from Tara Whyand.

I said in Article 1 that my intention is not to tell you what to eat, even though that might be a challenge for many and this theme continues. The issue with Nutrition and Diet in general, is that it’s very individual and what works for one may not work for another. Rather I’d like to focus in on why such things might have an effect – patients can then experiment and see what works for them. NET patients may have multiple problems and issues (including the effects of eating) which people may be relating to their cancer or the effects of a particular syndrome or treatment (working that out can be difficult!).  Even if I link you to an authoritative site, it will most likely only show GENERAL GUIDELINES, since patients with NET Cancer should really be assessed on a case-by-case basis.  However, I can say that from personal experience, these guidelines are a good base to start in understanding the issue.  You should always seek professional advice from a reliable ‘NETs aware’ nutritionist that can help you determine what your nutritional needs are and also can guide you in the right direction regarding food and supplement intakes.  Be wary of the internet on diet and nutrition, there is much ‘quackery’ out there and normally they want to sell something regardless of whether it’s good for you or not.  Fake healthcare news is big business unfortunately.  You may also enjoy article 2 and article 3 of this series in internet dangers.

In this article, I want to cover the ‘knotty’ problem of what is in food that might be provoking a reaction and why.  The other thing I would emphasise is that the cause of ‘provocation’ might not just be from what you have eaten, but how much. Moreover, whether the cause is syndromic, due to treatment; or from a comorbidity. For example, if you’ve had classic small intestinal NET surgery, you’re likely to be missing a few feet of small intestine and at least your ascending colon and all that goes with that (i.e. you’ve had a right hemicolectomy).  It follows that your food might transit quicker than normal on its journey from mouth to toilet.  There are no doubt other issues which might cause you to ‘move quickly’ and most of these issues will have been covered in Series Articles 1, 2 and 3.  For those with Carcinoid Syndrome, you may also find my blog on the 5 E’s useful.

A high level of serotonin is something people might be looking to avoid due to its relationship with midgut NETs and in particular those with Carcinoid Syndrome. One thing I noticed is that experienced dietitians are not saying you must totally avoid foods associated with serotonin.  I say “associated” because serotonin is not found in foods (another NET myth), it is manufactured from the amines in food.  The only time dieticians would recommend staying totally away from these foods is before and during a 5HIAA urine test (5HIAA is a by-product of serotonin) as this could skew the results. Experienced NET dieticians will also tell you that amines in foods containing the precursor to Serotonin will not affect tumour growth.  

It’s not just a serotonin problem – it is actually a much wider issue with something ‘vasoactive amines’ (or pressor amines).  They are precursors for catecholamines such as adrenaline, which trigger some NETs to secrete vasoactive substances, which cause symptoms or in extreme cases, carcinoid crisis.  Tyramine is the most active of these amines. Other strongly active vasoactive amines found in food include histamine that can cause strong dilation of capillaries, and also cause hypertensive crisis.  Reported reactions from these vasoactive amines are acute hypertension, headache, palpitations, tachycardia, flushing and unconsciousness. As a general rule, Tyramine and other pressor amines are usually only present in aged, fermented, spoiled protein products, but quite often, it’s food containing a precursor amine that is what you are looking for (for example Tryptophan is a precursor to Serotonin).

Personally I cannot think of a single food which causes me to have a ‘reaction’ other than if I eat too much or eat something with a high fat content.  Basically for someone who has had abdominal surgery, the system cannot cope for one reason or more – see Series Article 2.   It’s important to distinguish this type of reaction which is actually something caused by the consequences of cancer treatment rather than one of the ‘syndrome’ effects .  The answer might simply be to reduce or adjust food intake rather than cut foods out, particularly foods that you may need for nutrition and energy.  And of course, foods you enjoy which don’t cause issues, are related to quality of life.

What I do know from masses of experimentation and running a diary, is that large meals can give me issues. However, as hinted above, I put that down to surgery – NOT syndrome.  I also reduced consumption of fatty foods but that was mainly to combat malabsorption caused by my surgery and exacerbated by Somatostatin Analogues. Again NOT syndrome. I reduced alcohol but mainly because I was concerned about my compromised liver after surgery.

So what are the most provocative foods?  This diagram here is extremely handy BUT I must emphasise that the cause of the provocation may not have been caused by the food itself, just what people think and reported (clearly scientific intervention might prove it was caused by something else).  Everyone is different, so some people might not have any reaction to these foods.  As you can see, a large meal is top and I can almost guarantee much of this was caused by people having a shorter bowel due to surgery.

foods provoking
Graphic courtesy of The Carcinoid Cancer Foundation (CCF)

What are the foods containing high levels of these vasoactive amines?  It is here that I refer you to a site which was one of the very first things I read after my diagnosis, and I re-read it after my initial treatment when I discovered that my debulking and cytoreductive surgery came with some consequences.   This is an amazing piece of research put together by the late Monica Warner (wife of Dr Richard Warner) who herself said “It has not been an easy task to put these guidelines together“.  I don’t believe there is another source of such detailed research and guidelines on the Nutritional Concerns for the NET Patient (note the term Carcinoid is used throughout, therefore it tends to be focused on carcinoid syndrome.  Many other NET Syndromes have associated diet and nutrition constraints and problems too.

This is not an exact science and as the author said “I must emphasize at this point that these are only GENERAL GUIDELINES since patients with carcinoid (sic) may have multiple problems and must be assessed on a case-by-case basis.”. So for example eating a big meal comes out top of the survey and does not necessarily mean that is caused by carcinoid syndrome – as I said above, it’s very frequently caused by having a shorter gut, or no gallbladder, and other issues. You can eat a large meal containing very low levels of the offending amines and still run to the bathroom because your waste disposal system can’t cope with the amount – that is not a syndrome problem.  One person’s perceived ‘syndrome’ problem is another person’s cancer treatment ‘side effect’.  Working out which one is not easy but it’s worth the effort to try to understand which one might be causing the problem.

READ THE RESEARCH AND GUIDELINES BY CLICKING HERE

I hope you found my ‘food for thought’ tasty 🙂

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

[e] There is an excellent video from the NET Research Foundation (what to eat and why) – CLICK HERE

 

You can hear me talk about my diagnosis by clicking here

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!


Alcohol – the NET Effect

Opinion.

Social Media is currently full of ‘Dry January’ articles and of course many charities will benefit as people will be motivated if they are abstaining from alcohol for a good cause. Nothing wrong with that and no doubt some individuals will also see it as a way to cut down or at least lessen the effects of a very wet December!

I’ve never been a big drinker but I do like the odd beer now and then.  When I was diagnosed with metastatic Neuroendocrine Tumours (NETs), I hadn’t really thought much about how this might affect my body. It wasn’t until I studied a bit more about my disease and the consequences of my treatment, that I decided I would cut right down.  This turned out to be a pretty drastic cut as I can count the number of alcoholic drinks I consumed in the past year on one hand.

So what’s the deal with alcohol and Neuroendocrine Cancer?

There are some who might say that any alcohol is not good for any cancer patient. However, if your digestive system and your liver have been compromised by both disease and treatment, then is it perhaps best not to ‘stoke the beast’?   In fact, there are specific references to alcohol and its potential effect on a Neuroendocrine Cancer patient, particularly those who suffer from the syndromes associated with Neuroendocrine Cancer, e.g. Carcinoid Syndrome.

Alcohol is frequently mentioned as a trigger for Carcinoid Syndrome symptoms particularly flushing and this is possibly due to the levels of ‘syndrome triggering amines’ that it contains. It is in fact one of the 5 E’s using its synonym of ‘Ethanol’.  Many of us do feel a warm sensation in our faces (and beyond) when we drink alcohol as it can dilate blood vessels.  On the basis that some will react worse than others (…flush), then you can see why alcohol can be a trigger for flushing.  However, despite other reasons existing for alcohol related flushing, these triggers can often be important clues in diagnosing carcinoid syndrome.  Alcohol is second only to large meals in the list of foodstuffs reported to provoke reactions according references here.

But the odd beer does not make me flush?

I guess I’m lucky in that respect as I have read stories from people who cannot tolerate a single drop!  But there is another reason why I will not be rushing down to the pub to ‘sink a few’ and I guess this could apply to anyone who has a compromised system.   Food in your diet (and this includes alcohol) must be digested before being absorbed by your cells.  The problem with alcohol however, is that it flows directly through your body’s membranes into your bloodstream and your bloodstream carries alcohol to every organ in your body.  I don’t really want to add too much fuel to the smouldering remains of my body.

There is emerging scientific evidence linking alcohol to certain cancers – read more here in this excellent article from Cancer Research UK.

However, like anything in life, you can assess and then manage and mitigate the risks associated with an activity.  Things that can be potentially harmful in large amounts can still be enjoyable with disciplined moderation.  So, I will still be maintaining my very conservative alcohol regime but I doubt I will ever hit double figure beers in a single year.  A beer is now a very special treat at Birthdays, New Year, ‘Cancerversaries‘ and special holidays …….a reminder that I still live.

Cheers!
Cheers!

Chocolate – the NET effect


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I’ve always had a ‘sweet tooth’ and the softer the sweet the better – toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts and macaroon are all on my list of favourites.  In terms of desserts, I love those too – ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn’t complete without a biscuit (or three….). Don’t get me wrong, I’m not stuffing my face with sweet stuff 24/7, however I do need my sugar ‘fix’ now and then. I’m not a large person, I’m small ‘framed’ and although I was starting to look a bit ‘chubby’ early 2010, my Neuroendocrine Cancer diagnosis and subsequent treatment took care of that.

Coping with cancer is hard and it can lead to certain lifestyle changes including diet. This is also hard! Coping with the amount of available and contradictory dietary information on cancer is challenging too!  There is also significant ‘chatter’ suggesting that sugar ‘fuels’ cancer cells.  Apparently there are more than one million websites capitalising on this fear but virtually none offering any science.  However, if you check reputable websites such as the main US and UK research agencies, you will see this link has not been scientifically proven and this claim is debunked on many reputable cancer websites in their lists of ‘cancer myths’.  Of course the situation is not helped by the wide circulation of these myths by the misinformed via social media – we’ve all seen these haven’t we?

I’m not saying that sugar is a good thing but like many other facets of modern lifestyle, too much of a good thing won’t be good for long.  The last thing any cancer patient wants is (yet) another debilitating or long-term chronic illness, something always in the back of my mind. I now watch what I eat although I try to keep a balance so that I can still enjoy some of my favourite foods – my food diary helps identify the ‘culprits’.  I had actually cut down on sugar before I was diagnosed, it’s addictive so it can be hard work!

So are sweets dangerous for a Neuroendocrine cancer patient? Like a lot of other things, in moderation they probably don’t do any harm but that’s based on my own experience. The amount of specific amines in foods can be a useful guide to how much you eat.  Please note not everyone has bad reactions and foods high in these amines do not fuel tumour growth!  Moreover, the only time you should really avoid these high amine foods is just prior to a 5HIAA test (unless you have a consistently bad reaction to them of course).  Chocolate is said to be “moderately high” in tyramine, dopamine, xanthenes and theobromine.  One size doesn’t fit all though and NET nutrition guides emphasise the amount will often matter more than the food itself. I will therefore continue to eat small amounts 😃 If you want to learn more about NET nutrition – read here.

I think sweeet stuff is more dangerous for those at risk of diabetes more than any potential syndrome effect.  Read more about Diabetes and NETs by clicking here.

Let me complete the blog with a recent personal incident regarding chocolate indicating there is a dark side to it (no pun intended!).  I cracked a tooth whilst eating a piece of chocolate in 2014.  I never found the broken piece so I assumed I’d swallowed it.  I kept a lookout for a few days but no sign and I presumed I just missed it.  However, 32 days later, my regular surveillance CT scan revealed an “ingested foreign body or ‘entrolith’ within a loop of the small bowel”.  A bit of a worry given the amount of surgery I’ve had.  My Consultant said it would eventually work its way out of the body naturally and it did.  Phew!

Apologies to anyone unable to eat any chocolate without an adverse reaction 😡

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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