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.
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