An opinion post
When I first heard of something called “The 5 Es”, it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after I was aware of the risks …….. nothing happened! Before I was treated, stressful meetings (‘Emotions’) at work would make me flush though! As for ‘Eating’ – well that’s another couple of blog’s worth! Worth noting that many people without carcinoid syndrome will have reactions to eating (i.e. it isn’t only a carcinoid syndrome trigger); but there are specifics that might need some attention in someone with significant signs of carcinoid syndrome and elevated 5HIAA levels. The important thing is that they don’t apply to everyone, and they should always be carefully contextualised to avoid unnecessary worry and changes. It’s also important to note that many other types of NET syndromes can have similar issues, such as insulinomas, functioning pheochromocytoma/paraganglioma; and probably more if you dig deeper. Thus, why I’m not too keen on linking carcinoid syndrome to everything (and vice versa). It’s a misnomer term.
I’m proud to have invented something called the “The Other 5 Es“ and some people might think these are equally important. I wanted to cover my latest invention, something I’ve called The 6 Es. Not very original but if it ain’t broke don’t fix it so to speak, although minor improvements are fine!
The 6 Es (below) are that bit more important than The Other 5 Es and I encourage you to have a think about quality-of-life improvements but with emphasis on management of risks.
The 6 Es by Ronny Allan
Evaluate (your risks) before you go
I’ve been careful above by indicating there’s a quality-of-life vs risk balance to find. There are so many factors above and in some ways, it’s an individual decision on how someone wants to lead their life. If you are totally risk-averse, you may not have much of a life. We drive cars, we use electric tools and appliances, we cross roads. We get on with it. Normal life is full of risks and we assess and analyse these risks every day as we try to go about our normal activity. It’s the same as living with cancer.As someone with a stage IV cancer, albeit currently rather indolent, I’m aware that things might change but I want to get on with my life and that means I need to think about not being too risk averse. That means working around important therapy and appointments, ensuring I’m prepared when I’m out and about, e.g. take meds before leaving, take them with me where applicable, take enough supply for longer trips. Have a plan in case of big issues, have cover if overseas or some distance from your home, perhaps seek advice from your doctor to make sure you are fit to travel to the intended destination. I’m sure most of us do this as a matter of routine.
E.G.
Exercise
Ask any doctor about the benefits of exercise and there will be unanimous agreement that it is good for physical and mental health. There are so many studies confirming the benefits for cancer patients, particularly those living with long term conditions. Now ….. when I say exercise, I don’t mean go and climb up Mount Kilimanjaro (although if you are capable, why not?). I mean what is comfortable for you and this may just be a walk around the block. It might also mean a starting point, i.e. after a while, you may extend that to 2 blocks, 3 blocks and so on. And if you read my post on Cancer Related Fatigue, of the only 2 things known via clinical trials to help with that issue, one is exercise
Epinephrine
Epinephrine is another word for adrenaline. Exercise actually reduces levels of the body’s stress hormones, such as adrenaline and cortisol. It also stimulates the production of endorphins, chemicals in the brain that are the body’s natural painkillers and mood elevators. So there’s a connection to both exercise and taking part in what I call mini-adventures. Clearly there are extreme sports with a big connection to adrenaline due to the fight or flight reaction in taking part (parachuting, mountain climbing, etc). But my mini-adventures are nowhere near to extreme, involving only small(ish) hills and looking for fantastic views and new things to see. That said, the edge of cliffs make me slightly uneasy as I have a fear of heights (not a NET issue!) and so the ‘fight or flight’ feeling kicks in as I try to get near the edge for the best picture. Clearly, I don’t have any anaesthesia on trips (the real reason for the inclusion of epinephrine in the 5 E’s), but some exercise I do, particularly hills, increases my heart rate, makes my breathing more laboured but you have to remember, this is actually the body’s natural reaction in mild to moderate exercise. But it’s no crisis situation!
I’ve had 3 dental procedures using epinephrine in 2020/21 without any peri-procedure somatostatin analogue, other than the slow release Lanreotide every 28 days. Nothing happened but I’m not syndromic, I have normal 5HIAA levels, I don’t have a catecholamine secreting NET. You should always take professional advice with your own situation. NETs are a heterogenous grouping of cancers both in diagnosis and in management and surveillance requirements.
Emotions
The emotional side of cancer is a topical subject, mainly because it has some effect on many cancer patients but can be overlooked by healthcare professionals. In NETs many patients try to align and assign these issues to hormones, which is both right and wrong! Right because emotions do involve hormones in every person on the planet but mainly wrong because not every hormonal problem is there because of a NET syndrome. Statistics show that almost half of cancer patients will succumb to depression, sub-clinical depression, or some form of anxiety, and NET patients can succumb to these issues in the same way. Statistics also show that only around a third of NET patients have a functioning hormonal syndrome but it always seems more prevalent in patient groups.
I do seem to remember my facial flushing was linked to stress which is course linked to hormones, so I get this. I have to say that some of my daytrips, holidays and general outdoor walks etc, are an absolute stress reliever and something I totally recommend. The combination of the nice drive to a nice location in relatively nice weather, a nice bracing walk in the sunshine and sea breeze, followed by a something you really enjoy eating. I’m lucky to have Chris (Mrs Motivator) by my side which completes the total effect of the daytrip. Even moving 10 metres to the garden is peaceful (weather dependant of course).
I try not to worry to much about stuff. Worrying just makes you worry more. I conquered my fear of NET a long time ago when I realised I wasn’t going to die anytime soon. I’ll cross the bridge of fear when I get to it. Check out my 8 tips.
Eating
Our trips are normally well planned, sometimes we play by ear with the intention of eating out, sometimes we take our own food, sometimes we do both. I consider these outings a treat. If I want ice cream, I’ll have ice cream. I know I need to eat healthily and I’m told to avoid certain things (mainly due to my surgery and side effects of treatment). Now and then isn’t going to hurt me.
I once said to a room full of NET dietitians, “I see my diet as the risk management of my quality of life“. Life is about management risk and it’s a balance between having a good or not so good quality of life. What I meant by that is that it’s OK to have a treat now and then – the dietitians agreed.
A firm British seaside favourite – fish and chips followed by an ice cream. But since my surgery, I learned that will send me to the bathroom. BUT I am now armed with pancreatic enzyme replacement therapy (PERT) and I call this a “10 capsule meal”. It’s a treat, I don’t eat this every day.
The picture below illustrates the fish and chips and ice cream) represented by the piece of cheese, the 10 x digestive enzyme capsules I took with the food is the crash helmet to offset the blow of eating that metaphoric cheese.
We’ve had to give up so much since diagnosis – so now and then eat something naughty if you can tolerate it and it doesn’t give you any nasty effects.
My diet since diagnosis hasn’t really changed much, I was eating reasonably healthy despite a relatively plain diet. Nowadays I just avoid really large meals, high fat items (except for the treats mentioned above), I go for the leanest cuts of meat, I eat more white meat, I eat more vegetables, oatmeal; and I supplement where necessary. My weight is stable. But that’s just me, no single diet works for every NET patient. Sometimes the best diet is the one that works for you.
Ethanol
The 5th ‘E’. Ethanol is another word for alcohol (5 Es sounds better than 4 E’s and 1 A). Another topical subject and another thing that makes us all different. I decided a long time ago to vastly reduce my alcohol intake, particularly as I had liver surgery rather than syndrome connections. I wasn’t a really big ‘drinker’ so it was an easy transition. In any year since diagnosis, you could count the number of beers on one hand. However, in 2019 I found alcohol-free beer tastes no different than regular beer (to me), so I can now enjoy something I used to enjoy without worries. p.s. don’t ask for “ethanol-free” beer in the pub, you’ll get thrown out. Cheers!
Thanks for sticking with the post until the end!
Ronny
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