Home » Awareness » Let’s stop dehumanising NET patients

Let’s stop dehumanising NET patients


hoofbeats

The build up to NET Cancer Day has begun and I can hear hoofbeats becoming louder every day.  Is it a horse, is it a zebra etc etc.  However, is this aged equine medical adage still applicable as an awareness tool for Neuroendocrine Cancer or should we be looking for something which is more impactful, up to date, more compelling and more likely to attract to be taken seriously and attract new audiences?

For those unaware, the term ‘Zebra’ is a North American medical slang for arriving at an exotic medical diagnosis when a more commonplace explanation is more likely.  The original context of the term was to correctly indicate that the most obvious diagnosis of symptoms is normally correct. The ‘zebra posse’ would have you believe that every meeting should comprise a painstaking appraisal of every differential diagnosis just in case, i.e. “When you hear hoofbeats, think zebra”.  Clearly not practical and pretty dangerous to those who have the obvious diagnoses (i.e. the vast majority). It’s also likely to turn out to be a very expensive way to do business.  Common things are common! I’m not saying those who are destined to be diagnosed with an ‘oddity’ should be ignored for the ‘greater good’, I’m saying that hoofbeats are in actual fact normally the sound of horses in both equine and medical terms – thus why the saying was invented in the first place.  What I’m also saying is that perhaps we should stop ‘beating up’ and potentially insulting medical staff using the zebra analogy in our (flawed) PR.  I’m afraid cartoon zebras (diagnoses) looking sanctimoniously down on doctors is perhaps not the way to win friends and influence people.

The use of this skewed version of the phrase might be a great ‘rallying cry’ within the NET Cancer community but in my opinion it is fundamentally flawed in a number of ways including context.  Contextually, the zebra represents a term for a diagnosis (i.e. a disease) but the patients are not their diagnosis, they are not their disease – they are humans.  So when someone says “I am a zebra”, they are in effect saying “I am a disease”.

We really need to stop dehumanising patients. I think most NET advocate organisations tend to agree with this view as they mostly do not have zebra icons in their own branding i.e. they get it, even though they might not admit it.  If you hear the sound of hoofbeats in Kenya, it’s likely to be a zebra, so should the Kenyan NET organisation ask their doctors to look for horses?  Slightly flippant but necessary to make the point that our disease is international.

Moreover, the term is heavily associated with diagnostics (i.e. it has a very narrow scope). It does not sit nicely with the increasingly important long-term maintenance of patients – crucial when you consider this is mostly a slow-growing and therefore highly prevalent disease. Incidentally, the term ‘Zebra’ is not exclusively used by the Neuroendocrine Cancer community, it can be, and is used by, other cancers which quite often leads to confusion.  Moreover, the term is inextricably linked to rare diseases and as we all now know, NETs are no longer rare.

I’ve made no secret of the fact that I believe we need a paradigm shift in the way we (the Neuroendocrine Cancer community) spread external awareness of this less common type of cancer. I think everyone agrees we need a lot more public awareness of Neuroendocrine Cancer and also that we need some high-profile ‘ambassadors’ (preferably themselves patients) in order to help promote our cause.  Yes, money is useful too but in a ‘chicken and egg’ sense, we need a compelling case to attract the funds.  We need new audiences outside the ‘bubble’ I think we appear to be trapped inside.  

Here’s my beef.  If you speak to any primary or secondary care doctor, you’ll find they are very well aware of the conundrum when faced with a patient who presents with vague and odd symptoms and negative tests. Almost all will say they don’t need reminding that it might be an oddity.  They will definitely accept that some conditions are more difficult to diagnose than others and if you think that there are over 200 different types of cancer and literally thousands of conditions out there, you can see they have a really difficult job. Let’s be realistic, very few people are going to be diagnosed with Neuroendocrine Cancer at their very first visit to a doctor.  The same could be said for the majority of cancers and many other illnesses. Why, therefore, do we keep harking on about this fact? NET Cancer is much more likely to be diagnosed at secondary care and we should be equally or even more focussed at that level.  Don’t quote patient surveys to me, they are also fundamentally flawed both in terms of numbers of participants and the source of the participants.

I also know that many people (including patients) are both confused and incredulous at the NET communities use of this out of date and single issue awareness message.  For example, we need our awareness to cover the whole spectrum of being diagnosed and then living with Neuroendocrine Cancer.  We share so many issues with many cancer patients in the challenges of living with a long-term condition. This is not special, not unique. and it certainly isn’t a rare occurrence. Key facts continually missed and continually ignored by the ‘zebra posse’ (perhaps intentionally), is that this disease of ours is no longer rare, diagnosis is improving, both of which are now well documented.  The ‘zebra posse’ will ensure that quite ridiculous pictures of zebras, zebra patterned clothing and jewellery all take precedence over genuine patient concerns on Facebook forums, i.e. it is hindering proper support for NET patients.  As one well known NET patient said, “unfortunately the community has become too cute with the icon”.  He’s right, it is really holding us back.

I’m fairly certain my sequence of events (not the symptoms) is generally common. I presented with weight loss and low haemoglobin blood count – this (correctly) pointed to iron deficiency anaemia.  However, I was fortunate to be referred to a Gastroenterologist who was immediately suspicious that I looked so well (sound familiar?) and he therefore decided to go straight for a CT scan – bingo!  At no time up to this point did the Gastroenterologist suspect I had NET Cancer – he was simply following his instincts (I actually think he suspected Bowel Cancer).  Despite what you read on forums and in patient surveys (fact – both a very small snapshot of the NET patient population), many NET Cancer patients will show some activity on a CT scan and in most cases this will lead to further localisation checks and tests including biopsies where possible. I’m sure that earlier access to diagnostic testing (scanning in particular) will lead to earlier diagnosis. That’s a resource/process issue rather than just a training one. If your Doctors don’t suspect something, they won’t detect anything is a more practical and realistic phrase than the impossible and impractical one in current use by our community.

Additionally, to suggest that NET Cancer always presents with years of vague symptoms and requires several visits to a physician before diagnosis is confirmed is simply not true and is a myth.  And to suggest that an international patient survey of 5000 accurately represents the experience of hundreds of thousands of NET patients out there is way off beam, particularly when the source of the survey patient cohort is taken from those affected most.  Big Facebook forums do not represent the average experience of a NET patient.

Finally, I think the patient has a big part to play in diagnosis.  Thanks to the internet and the stellar rise of social media, many patients are now much more savvy and are presenting to doctors and specialists with lists of their symptoms and a diary.  Some will even have already compiled a list of questions to ask and have their own suggestions about what might be wrong with them.  Others may take an advocate with them.  Add in better diagnostic testing and greater access to it (including via primary care), then I think there are positive times ahead for the earlier diagnosis of Neuroendocrine Cancer.  You might say it’s a bit of a dark horse.

And sorry to repeat but it isn’t nearly as rare as we keep being told.

Thanks for reading

Ronny

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28 Comments

  1. I quite like ‘Lets talk about NETs” its inclusive. There is always going to be a problem with is it rare? While the numbers of people with a NET is increasing the numbers with an individual type of NET are still very low so Drs won’t see many phaeos or insulinomas even although they come under the NET umbrella. We are a heterogeneous patient group, which needs different treatments for different patients. I dont know how true this would be for other patient groups. Personally I dont like NET Cancer its like saying Brest Tumour Cancer which just sounds odd.

    Liked by 1 person

    • Ronny Allan says:

      I agree with the NET Cancer issue. Why I normally use the full term. I think we need to stop assuming NETS are so special, for example, there are 4 types of metastatic breast cancer but they all account as part of ‘breast cancer’ statistics, despite one of them being ‘uncommon’……. I could go on. Same for NETs.

      Like

  2. Discerning says:

    Very well stated, Ronny.

    Liked by 1 person

  3. Phillip Vickers says:

    “Common things occur commonly” and for the occasional rarity to be spotted something has to stand out as atypical or exceptional. For conditions such as NETs this may occur on average less than once in the professional lifetime of a General Practitioner. Spotting a Zebra in a herd of horses sounds quite an attractive notion but in reality with the numbers involved identifying the rare exception at an early stage is always going to be a formidable challenge.

    Liked by 1 person

  4. ronnyallan says:

    as for an alternative, that would need a study group but I’m sure I could come up with something a bit more appealing to the outside world. The zebra thing is really only liked internally, if we want to move forward externally to gain new audiences, I don’t believe it’s a good move. I’m a believer in selling patients – the people who suffer. The most powerful awareness messages I’ve seen all involve people.

    Like

  5. I’m in two minds about it. I liked the analogy when I was first getting diagnosed because I had to very quickly learn to be not only a patient, but a patient with a rare illness. It was hard getting my head around the fact that so many of the healthcare professionals I came into contact with had no idea what NET cancer was. They just assumed cancer, therefore chemo and I had to very quickly learn to speak up if they were making assumptions or treating me as if I had bowel cancer or liver cancer. Once I thought “oh I’m a zebra in a ward of horses” it helped, and it helped me see it from their perspective. And isn’t the message too about look for zebras, not horses and not the other way round? I am certainly one of those misdiagnosed. I got treated for acne rosacea when it was actually flushes.

    I do like to see the black and white striped ribbons, instead of pink. But thinking about it, NET cancer isn’t black and white is it? Far from it. I thought though that the emblem in the UK was the red butterfly? I liked that as to me a butterfly represents transformation, and that’s exactly what has happened with getting my diagnosis.

    Do you have a suggestion for an alternative?

    Liked by 1 person

  6. Ed says:

    sorry – couldn’t find the pr pack.
    Regarding stats, I take them at face value since I am in no position to find out the parameters to the equations they have set up….but that’s just me.

    Like

  7. ronnyallan says:

    Check the big organisations to see who is using the zebra brand?

    Like

  8. ronnyallan says:

    I’m sorry to hear that Ed, with any cancer, there will be late diagnosis but I believe this is improving with NET Cancer. I hope you get the treatment you need 😊

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    • Ed says:

      Thanks Ronny. I guess what I am trying to say is that in many ways carcinoid / net cancer sneaks up on people. It is often not diagnosed until it is already stage 4 because of the lack of symptoms. I had almost no symptoms until it was too late and those were misdiagnosed. Even after diagnosis, there are many people who are not as studious as you and I and are lost in the “maze” of medical “jargon” spewed out by ignorant doctors trying to cover up their lack of knowledge. I guess, in the end, I think that more people are victims of this sort of thing than will admit to it.

      Liked by 1 person

      • ronnyallan says:

        I’m well aware Ed, my surgeon reckons my tumours might have been growing for 10 years before I was diagnosed (by sheer luck I might add). I am metastatic, I will never be cured but I’ve learned to live with that fact. You have to remember that many stories and many statistics collected by organisations under the NET Cancer Day organisation (INCA) have been collected from patient forums. A lot of people on patient forums have the worst problems (thus why they are there) and I believe this skews the statistics. There are between 150-200,000 people in US with NET Cancer but only up to 5000 on the big forums (allowing for duplications/normalisation). I suspect between 35,000-50,000 in UK but less than 1,000 on forums.

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  9. Ed says:

    I guess I should have also noted that my carcinoid cancer went undetected for years and spread throughout my body. To be honest, I was told by more than one doctor (oncologists) that I was done a great disservice. So, I see things a bit differently than you but that’s what makes us all individuals. 🙂

    Liked by 1 person

  10. Ed says:

    Hmmm….I think a new and better effort would be appropriate but I think the “zebra” has gained quite a bit of momentum in the carcinoid/net community. You would have to redirect that without losing the momentum and energy already built up. I think that might be pretty difficult. There are quite a number of larger organizations and charity groups that have used the zebra. Still, you have a good point.

    Liked by 2 people

  11. zebrakat says:

    For me I was rushed into hospital after collapsing in the middle of the night and surgery that day reveal all. My symptoms were put down to generic problems in two countries previously. I don’t blame the doctors because that can happen with all illness, however I do have issue if they know about the illness and access to the right tools and don’t react. 😄

    Liked by 1 person

  12. My gastroenterologist also suspected something else was going on, and after scan results referred me on to the endocrinologist, who had his suspicions straight away as soon as he saw my results. We cannot expect the GP to know everything, that’s what the specialists are for, and my practice had never heard of it. I am extremely grateful to have a diagnosis.

    Liked by 1 person

  13. Reblogged this on Tony Reynolds Blog and commented:
    We are all responsible for our personal development and health, working in partnership with GP’s, medical experts. But do we?

    Liked by 1 person

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