Neuroendocrine Cancer – were you irritated by your misdiagnosis?


irritable-bowel-syndrome

Look on any site about Neuroendocrine Tumours (NETs) and you’ll find the term IBS (Irritable Bowel Syndrome) frequently mentioned. That’s because it’s a common misdiagnosis for many before being formally diagnosed with NETs.

But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future?  I just spent a few hours doing an online training course on IBS and I want to pass on some stuff I found to be very useful. I have never been diagnosed with IBS but having researched the issue through some training, I can understand why it might be in the thoughts of a general practitioner for many scenarios.  Much of my research was focussed on the British Society of Gastroenterology (BSG) who sponsored the online course I completed which also used material from their magazine Gut, a leading international journal in gastroenterology.

What is IBS?

Irritable bowel syndrome (IBS) is a common, long-term condition of the digestive system. It can cause bouts of stomach cramps, bloating and excessive wind, diarrhoea and/or constipation, feeling of incomplete emptying, mucus in stool; and many other symptoms (see NHS IBS siteThe symptoms vary between individuals and affect some people more severely than others. They tend to come and go in periods lasting a few days to a few months at a time, often during times of stress or after eating certain foods.  IBS is a heterogeneous condition with a range of treatments.  There are in fact different classifications of IBS and the diagram below supports the list with some context:

    • IBS-D – diarrhea based
    • IBS-C – constipation based
    • IBS-M – mix of both diarrhea and constipation

ibs-types

You can see why someone presenting with diarrhea or IBS-D type symptoms might be automatically assumed to have IBS despite the fact that these symptoms could also apply to many other conditions including several cancers.  However, what I also found is that in the UK, there is now updated guidance from NICE (National Institute for Health and Care Excellence) to aid GPs and other physicians on how to properly diagnose IBS.  In fact, the online course I undertook is one of many now being offered to medical staff as part of the new guidance. That sounds like a good thing in practice (although I did notice some differences between the BSG recommendations and what is published by NICE…….. £ )

How is IBS diagnosed?

That is considerably complex as the symptoms are fairly general.  However, I was encouraged to find that doctors should assess any ‘red flag’ indicators that would need referral to secondary care before any firm decision on IBS was made. These include (but not limited to), unintentional and unexplained weight loss, rectal bleeding, family history of bowel or ovarian cancer, a change in bowel habit to looser and/or more frequent stools persisting for more than 6 weeks in a person aged over 60 years, anaemia, abdominal masses, rectal masses, inflammatory markers for inflammatory bowel disease.  That’s very interesting because in 2010, after mentioning some unintentional weight loss, my GP said ‘anaemia’ to me and referred me to secondary care.  Perhaps I was lucky but perhaps, my GP’s team were just professional and thorough?  That said, if you’re with me so far, you can see why IBS might be an easy diagnosis to make for someone presenting with either diarrhea/constipation issues with no other obvious symptoms or abnormal test results (particularly IBS-D).

Why might NETs be frequently misdiagnosed as IBS?

Using the NICE guidelines, I noted there are a range of tests to preclude other diagnoses including: full blood count (FBC), erythrocyte sedimentation rate (ESR) or plasma viscosity, c‑reactive protein (CRP), antibody testing for Coeliac disease. Whilst abnormal results of these tests might show up something to investigate further (i.e. FBC – haemoglobin worked for me), none of them include looking ‘inside’ the patient and I guess there is a resource/finance issue involved here.

In fact, the guidelines also list a number of tests that are NOT necessary to confirm a diagnosis of IBS. These include: ultrasound, rigid/flexible sigmoidoscopy, colonoscopy, barium enema, thyroid function test, faecal ova and parasite test, faecal occult blood, hydrogen breath test.  You can see the issues ………..

The guidelines go on to say that a diagnosis of IBS should be considered only if the person has abdominal pain or discomfort that is either relieved by defecation or associated with altered bowel frequency or stool form. This should be accompanied by at least two of the following four symptoms:

  • altered stool passage (straining, urgency, incomplete evacuation)
  • abdominal bloating (more common in women than men), distension, tension or hardness
  • symptoms made worse by eating
  • passage of mucus.

    Other features such as lethargy, nausea, backache and bladder symptoms are common in people with IBS, and may also be used to support the diagnosis

I also noted that the causes of IBS are inextricably linked with Psychological issues and the guidance also includes therapies including cognitive behavioural therapies (CBT) relaxation therapies, and hypnosis.

So if you’re one of the unlucky ones who has presented with “IBS like” symptoms and have normal test results as per above, you may not get the opportunity to get to further testing to find the true diagnosis. It’s possible that you saw a physician who has not followed guidelines for diagnosing IBS, if indeed such guidelines were available to him/her.  The inclusion of psychological issues also connects with many anecdotal stories of NET patients being told they needed psychological help before eventually being diagnosed with NETs.

I can see many similarities in the descriptions of IBS symptoms and the sort of things you can read on NET forums – curiously including the effects of NET Cancer surgery and other treatment after diagnosis.

Slight digression but if this subject is of interest, you may like to comment.  I once said to my Oncologist that I felt as if I had IBS since my surgery and somatostatin analogue treatment. In fact, I told him that I thought my bowel was more than irritated, it was bloody angry 🙂  During my research, I couldn’t help noticing that some of the suggestions and recommendations for IBS are similar to that offered to a post surgical NET patient.  You may therefore like my blog series on Nutrition which was co-authored by a NET specialist dietician who is also IBS aware.

Preventing or Reducing a Misdiagnosis of IBS (all illnesses)

The course looked at this angle as it was clearly keen to emphasise this to medical people going through the module.  The NICE guidelines read like a process which must be strictly followed but at the end of the day, they are just ‘guidance’ and should not stop doctors thinking outside the box.

A recent study suggested that as many as 1 in 6 patients (~16%) with symptoms of IBS had another disease.  Approximately 7% had Crohn’s disease, 3% coeliac disease, and 2% microscopic colitis when they were formally tested. Patients with IBS-diarrhoea predominant more often had abnormalities than those with IBS-constipation predominant (interesting for NETs).  The paper stresses the importance of tailored investigation of patients presenting for the first time.

One in six patients with symptoms compatible with IBS without alarm features in this selected group exhibited organic GI disease following investigation. Assessment of alarm features in a comprehensive history is vital to reduce diagnostic uncertainty that can surround IBS. You can, if you wish, read the abstract of the paper on the link below.

The issue here is that people not meeting the criteria for further checks may be precluded for scans and other tests due to lack of clinical evidence and their diagnosis of IBS will stand.  As this was a study, clearly some of them might have gone on to present with sufficient clinical evidence to warrant more checks and subsequent diagnosis of something else at a more advanced stage.  Clearly this sounds familiar with NETs.  However, looking at the figures above, I suspect the figures for NETs IBS misdiagnoses are pretty small in comparison to those who are correctly diagnosed with IBS.  To put that into context (in the UK), according to the NHS, IBS is thought to affect up to one in five people (10,000,000 in UK alone) at some point in their life, and it usually first develops when a person is between 20 and 30 years of age and around twice as many women are affected as men.  Compare that with a UK NETs prevalence of around 40,000 (guesstimate), you can see that a misdiagnosis of IBS for NETs, is not that common.  However, one misdiagnosis is one too many. 

Summary

Having done this course and read the accompanying references (some only abstracts), I can see the scope for people with many different illnesses being misdiagnosed with IBS. However, the use of alarm symptoms and ref flag indicators should be helping to reduce this. I’m guessing that many people in first line care may not be fully aware of the IBS guidelines to be able to take heed.  I’m also guessing that in the UK (at least), a 10 minute appointment with a busy GP is just not going to solve some of these symptom clashes and many visits might be required to move forward.

It’s really difficult to advise anyone going through a diagnosis of IBS as to how to approach a physician who says they have IBS and they think this is wrong.  In the case of NETs, other cardinal symptoms may be of use in convincing physicians (e.g. flushing).  Armed with this knowledge, I would say to anyone who suspects NETs but are faced with an IBS diagnosis, take a copy of the BSG and NICE guidelines to your doctor and tick off all the differential ‘ref flag’ and ‘alarms’ issues ensuring that each has been tested before accepting the IBS diagnosis.

References used to support compilation of this blog:

NHS Site – IBS

The IBS online course (it may expire depending on when you read this post)

Prevalence of organic disease at colonoscopy in patients with symptoms compatible with irritable bowel syndrome: cross-sectional survey (abstract only, not full article)

BSG Guidelines on the irritable bowel syndrome: mechanisms and practical management (full article)

NICE Guidance – Irritable bowel syndrome in adults

Thanks for reading

Ronny

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

 

Colonoscopy Comedy

 

No more prep please!

Last year I wrote a series of blogs on the ‘coping’ side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I’ve had, I sometimes have a little laugh even although I wasn’t laughing at the time!  My favourite ‘treatment laugh’ is the ‘suppository story’ which occurred in hospital shortly after my first major surgery – it wasn’t funny at the time but I smile when I think back to it. On a similar subject, I had a colonoscopy around 21 months prior to my actual NET Cancer diagnosis.  Like the guy in the story below, I don’t remember a thing. However, what I do vividly remember (and clearly so did he!), is that the preparation for the procedure can be a ‘challenge’.  I can vouch for that.

I came across this real but anonymised journal which you may enjoy and hopefully have a little laugh too.  I suspect those who have had a colonoscopy (or two) will enjoy it more than others! I suddenly realised colonoscopies can be funny on the basis I laughed out loud reading this.  The quotes from doctors at the end are hilarious!

Colonoscopy Journal:

I called my friend Axxx, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Axxx showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis. Then Axxx explained the colonoscopy procedure to me in a thorough, reassuring and patient manner.  I nodded thoughtfully, but I didn’t really hear anything he said, because my brain was shrieking, ‘HE’S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!’

I left Axxx’s office with some written instructions, and a prescription for a product called ‘MoviPrep,’ which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America’s enemies.

I spent the next several days productively sitting around being nervous.
Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn’t eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons). Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes – and here I am being kind – like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, ‘a loose, watery bowel movement may result.’ This is kind of like saying that after you jump off your roof, you may experience contact with the ground.  MoviPrep is a nuclear laxative. I don’t want to be too graphic, here, but, have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

After an action-packed evening, I finally got to sleep. The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, ‘What if I spurt on Axxx?’ How do you apologize to a friend for something like that? Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Then a nurse named Exxxx put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Exxxx was very good, and I was already lying down. Exxxx also told me that some people put vodka in their MoviPrep. At first I was ticked off that I hadn’t thought of this, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house down. When everything was ready, Exxxx wheeled me into the procedure room, where Axxxx was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Axxx had it hidden around there somewhere. I was seriously nervous at this point. Axxxx had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand. There was music playing in the room, and I realized that the song was ‘Dancing Queen’ by ABBA. I remarked to Axxx that, of all the songs that could be playing during this particular procedure, ‘Dancing Queen’ had to be the least appropriate. ‘You want me to turn it up?’ said Axxx, from somewhere behind me. ‘Ha ha,’ I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like……………

I have no idea. Really. I slept through it. One moment, ABBA was yelling ‘Dancing Queen, feel the beat of the tambourine,’ and the next moment, I was back in the other room, waking up in a very mellow mood. Axxx was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Axxx told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.

On the subject of Colonoscopies……..

Colonoscopies are no joke, but these comments during the exam were quite humorous!!!!! A physician claimed that the following are actual comments made by his patients (predominately male) while he was performing their colonoscopies:

1. ‘Take it easy, Doc. You’re boldly going where no man has gone before!’
2. ‘Find Amelia Earhart yet?’
3. ‘Can you hear me NOW?’
4. ‘Are we there yet? Are we there yet? Are we there yet?’
5. ‘You know, in Arkansas, we’re now legally married.’
6. ‘Any sign of the trapped miners, Chief?’
7. ‘You put your left hand in, you take your left hand out…’
8. ‘Hey! Now I know how a Muppet feels!’
9. ‘If your hand doesn’t fit, you must quit!’
10. ‘Hey Doc, let me know if you find my dignity.’
11. ‘You used to be an executive at Enron, didn’t you?’

And the best one of all:

12. ‘Could you write a note for my wife saying that my head is not up there’

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thanks for listening

Ronny

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