Going to the ‘toilet’ can sometimes be a taboo subject …… unless you are a Neuroendocrine Cancer patient of course 🙂
Firstly, it is a key symptom in Neuroendocrine Tumour NET Syndromes and types, in particular, Carcinoid Syndrome but also in others such as those related to VIPoma, PPoma, Gastrinoma, Somatostatinoma and Medullary Thyroid Carcinoma (MTC).
Secondly, it can be a key consequence of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.
Of course, it’s possible that both of these situations are contributing, i.e. where relevant hormone markers are elevated in those with a NET Syndrome.
I want to give a general definition of diarrhea as there are many variants out there. In general, they all tend to agree that diarrhea is having more frequent, loose and watery stools. Three or more stools per day seems to be the generally accepted threshold, although some sites don’t put a figure on it. It’s not pleasant and just about everyone on the planet will suffer it at some point in their life, perhaps with repeated episodes. Normally it’s related to some kind of bug, or something you’ve eaten and will only last a few days before it settles (acute diarrhea). Diarrhea lasting more than a couple of weeks is considered chronic and some people will require medical care to treat it. It can also be caused by anxiety, a food allergy/intolerance or as a side effect of medicine. Pharmacists and GPs will be seeing many patients with this common ailment every single day of business.
Diarrhea induced by a NET Syndrome
When you consider the explanation above, it’s not really surprising that diarrhea related symptoms can delay a diagnosis of Neuroendocrine Cancer (and most likely other cancers too, e.g. bowel cancer). Diarrhea is the second most common symptom of Carcinoid Syndrome (Flushing is actually the most common) and is caused mainly by the oversecretion of the hormone Serotonin from the tumours. Please note diarrhea from other types of syndromes or NETs may be caused by other hormones.
I’ve heard stories of people being told they have IBS or something similar for years before they received what is now a late diagnosis and at an advanced cancer stage. This is only one of the reasons why NETs is not an easy condition to diagnose. Even after treatment to remove or reduce tumours, many people will remain syndromic and need assistance and treatment to combat diarrhea induced by a NET syndrome (see below).
Sorting out the symptoms – post diagnosis
I like to describe this as the Neuroendocrine Cancer jigsaw. It’s a really difficult one and sometimes you cannot find a piece, or the pieces won’t fit. However, metaphorically speaking, the missing piece might be a NET specialist presentation, a comment, statement or view from another patient, a link to an article from a reputable source, or even something you do to improve your lot – there might even be trial and error involved. It might even be this blog!
How do you work out whether diarrhea is caused by a hormone producing tumour or by the side effects of treatments? There’s no easy answer to this as both might be contributing. One crude but logical way is to just accept that if you have normal hormone markers, mainly 5HIAA for midgut carcinoid (there could be more for other tumour/syndrome types), and you’re not really experiencing any of the other classic symptoms, then your syndrome might be under control due to your treatment i.e. debulking surgery and/or somatostatin analogues, or another drug. My Oncologist labels me as ‘non-syndromic – something which I agree. I’m 99.9% sure my issues are as a result of my treatment.
Diarrhea as a Consequence of Neuroendocrine Cancer Treatment
All cancers come with consequences of treatment and Neuroendocrine Cancer is definitely no exception here. For example, if they chop out several feet of small intestine, a chunk of your large intestine, chunks (or all) of your stomach or your pancreas, your gallbladder and bits of your liver, this is going to have an effect on the efficiency of your ‘waste disposal system’. One effect is that it will now work faster! There are also knock-on effects which may create additional issues with the digestive system including but not limited to; Malabsorption. I strongly recommend you read my blog on Malabsorption.
Somatostatin analogues are an interesting one as they are designed to inhibit secretion of particular hormones and peptides by binding to the receptors found on Neuroendocrine tumour cells. This has the knock-on effect of inhibiting digestive enzymes which are necessary to break down the fat in our foods leading to Malabsorption of important nutrients. This may also lead to diarrhea symptoms following a meal with high levels of fat as the system fails to cope. This is not syndrome induced diarrhea. The gastointestinal malabsorption associated with Neuroendocrine Cancer can also lead to something known as steatorrhea. This isn’t diarrhea and patients will recognise it in their stools which may be floating, foul-smelling and greasy (oily) and frothy looking.
Clearly, I cannot offer any professional medical advice on coping with diarrhea, I can only discuss my own situation and what I found worked for me. Don’t forget, like many diseases, what works for one, might not work for another. However, I did tackle my problems following the advice of an experienced dietician who specialises in NET Cancer. That said, I was ‘sleep walking’ for over 2 years thinking my issues were just part of the game I was now in …… how wrong I was about that!
Treatment for Diarrhea
This disease is so individual and there are many factors involved including the type of syndrome/NET, patient comorbidities and secondary illnesses, consequences of the surgery or treatments performed, side effects of drugs – all of which is intermingled with suspicion and coincidence – it’s that jigsaw again! I always like to look in more detail to understand why certain things might be better than others, I always challenge the ‘status quo’ looking to find a better ‘normal’. I really do think there are different strategies for syndrome induced diarrhea and that which is a result of treatment or a side effect of treatment. There’s also different prices, with inhibitors costing thousands, whilst classic anti-diarrhea treatments at just a few pennies. Adjustments to diets are free!
When I was discharged from hospital after the removal of my small intestinal primary, I was in the toilet A LOT (I was actually in the toilet a lot before I was discharged – check out my primary surgery blogs here) . My surgeon did say it would take months to get back to ‘normal’ – he was right and it did eventually settle – although my new ‘toilet normal’ was soft and loose and several times daily. My previously elevated CgA and 5HIAA were eventually back to normal and my flushing had disappeared. I didn’t have too many issues with diarrhea before diagnosis. Deduction: my issues are not syndrome induced.
I read that many people find basic ‘Loperamide’ (Imodium) helps and I tend to agree with that if you are non syndromic and just need that little bit of help. I decided long time ago I would not become ‘hooked’ and only really take it for two purposes: 1) if I have a bad patch and 2) if I’m going on a long journey (i.e. on a plane perhaps). I estimate I’ve used 2 packets in as many years. Loperamide decreases the activity which causes intestinal motility (peristalsis). This has the effect of increasing the time material stays in the intestine therefore allowing more water to be absorbed from the fecal matter. Ideal for those with a shorter bowel due to surgery – there are many contraindications though (so advice from a medical professional is always advisable). However, these types of anti-diarrhea drugs work in a different way to those designed to tackle syndrome induced diarrhea. To reduce the risk of malabsorption induced diarrhea and steatorrhea, the use of Pancreatic Enzyme Replacement Therapy (PERT) should be introduced as required by your NET specialist.
As for my own strategy, I filtered out the advice from a NET specialist dietitian and have managed to make quite a difference to my Quality of Life (QoL) by making some changes to diet (they were not huge changes), included supplementation where necessary, reduced stress as far as is practical to do, exercised more and maintained a diary to help with monitoring progress or setbacks. Hydration is also important and I’m working on that one. I’ve gone from 6-8 visits to 1-2 visits (as an average, it’s actually less than 2). This didn’t happen overnight though. All of this doesn’t mean to say I don’t have issues from time to time …… because I do!
Syndrome Induced Diarrhea
Like many other NET patients, I’m on a 28 day injection of somatostatin analogues (in my case Lanreotide). Both Octreotide and Lanreotide are designed to reduce the effects of NET syndromes and therefore can make a difference to syndrome induced diarrhea. These drugs also have anti-tumour effect and so even if they do not halt or adequately control syndrome induced diarrhea, they are still a valuable contribution to NET treatment.
Some syndromic patients find they still have diarrhea despite somatostatin analogues and they end up having ‘rescue shots’ or pumps for relief (both of these methods tend to be Octreotide based). Some have more frequent injections of the long acting versions of somatostatin analogues which has the effect of increasing the dosage. There’s help on the way for those whose carcinoid syndrome is not adequately controlled or they are unable to have somatostatin analogues as a treatment. Telotristat Eythl works by inhibiting tryptophan hydroxylase (TPH), a chemical reactor involved in the manufacture of serotonin, which is the main cause of syndrome induced diarrhea. It was approved by the US FDA in February 2017. Read about this exciting development here.
In summary, I think it’s important that people be sure what is actually causing their diarrhea after diagnosis so that the right advice and treatment can be given. There is a bit of an overlap between ‘syndrome induced’ and ‘consequences of treatment induced’ and it’s not always easy. However, improvements are possible.
Of course, some people sometimes have the opposite effect but that’s in another blog here – Constipation
You can also obtain a toilet card from Macmillan – see here
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