One of the curious things about Neuroendocrine Cancer (NET Cancer) is that it can exhibit one or more vague symptoms collectively known as a 'syndrome'. There are various syndromes depending on the location and type of NET Cancer but the most common is associated with mid-gut carcinoid tumours known as 'Carcinoid Syndrome'. Those with Carcinoid Syndrome are likely to be (but not always) at an advanced stage of the disease (i.e. metastatic).
Statistics vary from source to source but it is estimated that around a third of all mid-gut NET Cancer patients will present with metastatic disease and around a third of those (∼10% of all mid-gut carcinoid) will exhibit Carcinoid Syndrome indicating their tumours are functional (secreting excess hormones). It follows that Carcinoid Syndrome is pretty rare! I believe I'm currently 'syndrome free' but I did suffer for a year in 2010. When I read about the experiences of other people who suffer much worse than I ever did, I know I got off lightly - although my treatment played and continues to play its part.
These tumours and the syndrome are treatable for most but the difficult part can be arriving at a diagnosis. However, without a syndrome, some of these tumours can be silently growing and as they grow slowly, the 'silence' can go on for some years. Even with the syndrome, the root cause can remain disguised as the symptoms are similar to many day-to-day illnesses. The most common symptoms of Carcinoid Syndrome are flushing and diarrhoea but not many people know this and these are frequently confused with other conditions. In my own case, I was experiencing flushing but totally ignored it. However, it ended up being instrumental in my diagnosis albeit some luck was also involved. You can read about this here - Diagnosis – I’m no longer in control
Thus why NET Cancer is one of the most misdiagnosed cancers on the planet with some people suffering from the side effects for many years before a correct diagnosis is made - I touched on this in my blog NET Cancer Diagnosis - how early is early?
Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read and I'm particularly struggling with the what not to say! In my last blog - Exercise is Medicine, I hinted at a collection of 'E' words (5 of them) which is a handy list for Carcinoid Syndrome patients. I only discovered this list last week - I did say I was on a perpetual learning phase! I kind of knew most of it and I'm certain there is science to substantiate the list. These 'E's are apparently the most common 'triggers' for Carcinoid Syndrome but clearly they are not going to have the same effect on every patient. They are important though as a severe attack of Carcinoid Syndrome symptoms could be debilitating and life-threatening. This is known as a 'Carcinoid Crisis' which is very dangerous on the operating table due to the effects of anaesthetics - thus why many NET Cancer patients may be infused with Octreotide prior to surgery or other procedures.
NET Cancer is complex and most things need to be read in the correct context. This is why I believe NET Cancer (Carcinoid) patients need to answer some key questions when considering the 5 E's:
The vagaries of this disease will no doubt throw up some exceptions and additions. There will be patients who have no syndrome but have elevated biochemistry and vice versa! Additionally there will be patients who have had surgery and/or are being treated with somatostatin analogues but will still be syndromic in varying degrees of severity.
The 5 Es
Epinephrine
This was a new piece of information for me and I only discovered this as a potential problem when I started monitoring some of the USA Facebook forums. This does not appear to be that well-known in UK. Epinephrine (more commonly known as adrenaline) is a medication commonly found in over the counter allergy and cold medications. It is often used in dentistry as a local anaesthetic. Nowadays, I try not to take cold remedies (I tend to just 'suck it up'). However, for the dentistry side, I won't risk this, so I've instructed my Dentist to place a note on my record asking for epinephrine not be used (and clearly I'll remind them each visit!).
Eating
This is very individual. Certain foods or large meals can be difficult, particularly if you have had any gastro-intestinal surgeries. As I said above, I keep a personal diary trying to identify things that upset my system. I try to find some balance between what I know is good for me and also what I know I enjoy. For example, I found that very large meals do not agree with my 'new plumbing'. If I eat a lot of sweets, I'll also suffer .....so I just eat a little - check out my blog post 'Carcinoid and Chocolate'. However, I'm fairly certain the vast majority of my issues are related to my treatment (past and present) rather than being provoked by Carcinoid Syndrome. So with this in mind, I have porridge (oatmeal) for breakfast and I try to also eat bread containing oats. I 'graze' most of the day and then eat a small to medium-sized meal in the evening. I've only been doing this for 18 months in conjunction with a diary and it seems to be working OK.
My friends in the Carcinoid Cancer Foundation have excellent and comprehensive 'guidance' on diet click here. If you're just after the basics and like handy booklets, NET Patient Foundation has an excellent one which I strongly recommend - click here. Incidentally, dieticians with a specialism in NET Cancer are rarer than hen's teeth in UK - more on that later!
I want to really emphasise that nobody is saying you must not eat any of the foods on these lists! Some can indulge in those foods and some cannot. For example, chocolate and caffeine (tea/coffee) are on the lists but I eat/drink those frequently (in moderation) and have no problem. It's a case of testing things out.
Emotions
Stressful situations can cause symptoms to flare up. While it is difficult to avoid all stress (work, home, commuting, etc), it is helpful if you can manage or reduce it. Like eating, this is very individual area. From personal experience, I know stress can exacerbate carcinoid syndrome. Before I started my treatment, I was regularly flushing in meetings at work (think boxing matches!). After my treatment, stress was definitely a factor causing increased bowel motility. I've removed a lot of stress from my life and it helps. Unfortunately my football team's latest performances are not helping at all :-(
Exercise
Exercise is extremely important for overall health and well-being and I know quite a lot of NET Cancer patients who exercise regularly without issues. It can, however, trigger carcinoid syndrome if you overdo it. Even a walk around the garden or gardening is exercise. When I was at work, I would walk to see people rather than phone them, it all added up! Sometimes I walk to town rather than drive. I have evidence from my own exercising regime proving in my case that Exercise can have the effect of reducing the knock on effects of some of the other E's (emotions and eating) - check out my blog entitled 'Exercise is Medicine' click here
Those who are syndromic and/or have other conditions to manage are probably best to take medical advice on how much exercise they need to do.
Ethanol (alcohol, liquor)
Many NET patients have difficulty tolerating wine, beer and spirits (hard liquor). I was never a big drinker so for me it was easy to go almost teetotal. I do have the occasional beer but very infrequently and normally on holiday - I personally don't get any issues with the odd beer but again this is trial and error.
Summary
I'm sure there could be a 5 A's to 5 Z's list of things to avoid but as I said alluded to above, this needs to be balanced with quality of life. If you look on most Facebook closed group or forums, you will always find at least one person is affected by something which affects no-one else. Additionally, the ubiquitous and sometimes unhelpful cancer myths seem to go viral can be a distraction.
Please note this blog is just my own appreciation of these issues and I must emphasise once again that everyone had different experiences. I do however, think it's important to consider any secondary illnesses, effects of surgery and biochemistry results (or indeed a combination of one or more of these factors).
Everything in life involves some kind of risk management and if you are totally risk averse, then you are unlikely to have much of a life! It is difficult but my daily diary helps me assess trends and work out what things upset me more than others - I can then reduce or eliminate. You therefore need to tailor you own advice perhaps with the help of a doctor and/or dietician versed in NET Cancer.
This blog post has turned out longer than I envisaged but it's a very complex area. I hope this has given you some insight into a very important subject for NET Cancer patients. I intend writing a follow on post on the related subject of malabsorption and vitamin supplements, so look out for that please!
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