Ronny Allan is an award-winning international patient leader advocating for Neuroendocrine Cancer and cancer patients generally. Check out his Facebook pages and twitter accounts.
OPINION
The build up to (so called) 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, more likely be taken seriously and attract new audiences? p.s. even our day has a ridiculous name – “NET Cancer” decodes to “Neuroendocrine Tumour Cancer” which is quite ludicrous not only because of the grammar but also because it precludes a whole bunch of people from the Neuroendocrine Carcinoma area of the disease. The term World Neuroendocrine Cancer Day is so much better
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. Like many things from North America including fast food chains, it often worms its way into Europe and beyond. The original context of the term was to correctly indicate that the most obvious diagnosis of symptoms is normally correct – i.e. hoofbeats is almost always the sound of a horse.
“When you hear hoofbeats, think zebra” is 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 as common things are common (in fact Neuroendocrine Cancer is now much more common that it was 30 years ago…..).
I’m not suggesting those who are destined to be diagnosed with ‘exotic’ diseases 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. By the way, Neuroendocrine Cancer has the fastest rising incidence of all cancers on the planet so it’s far from exotic. What I’m also saying is that perhaps we should stop ‘beating up’ and potentially insulting medical staff using a maladjusted version of the hoofbeat analogy in our PR. I’m afraid the use of cartoon zebras looking sanctimoniously down on cartoon doctors is perhaps not the way to win friends and influence the people we need to work with in helping diagnose quicker. I will never understand why outwardly sensible organisations including one Neuroendocrine Cancer scientific organisation, uses the icon on social media.
Many doctors pride themselves on improving communications with patients, including the need to not dehumanise them but then ‘dog whistle’ the icon in their social media and branding. I think most are on board but some act like they are part of the ‘cult of zebra’ which I find condescending.
I think most advocate organisations would agree the icon is not ideal as they mostly do not have zebra icons in their own branding i.e. they get it, even though they might not admit it for fear of upsetting the zebra HQ. By the way, 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 and yet certain organisations appear to be aloof by using it as an international slogan when it is just not relevant internationally, particularly as some countries have now declared that it isn’t a rare disease using their own metrics (and some ignore the growing epidemiological evidence for their own purposes).
Contextually, a zebra is a diagnosis not a person
The use of this skewed version of the phrase might be a great ‘rallying cry’ within the Neuroendocrine Cancer community and for some a ‘populist’ Facebook ‘like farming’ scheme but sharing quite ridiculous pictures of animals that will only be shared and understood by those within the community is NOT real awareness.
In my opinion, the ancient, outdated, and misleading zebra term is fundamentally flawed in a number of ways.
1. 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”. If they say, “Dear Zebras”, they are saying “Dear Diseases”. Or the cringeworthy “My fellow diseases”
cringeworthy statementsI’d rather not hug a disease
2. Scope. 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.
3. Confusion. The term ‘Zebra’ is not exclusively used by the Neuroendocrine Cancer community, it can be, and is used by, other conditions which quite often leads to confusion.
4. Relevance. The term is inextricably linked to rare diseases and as we all now know; NeuroendocrineCancer is no longer rare, even in US. Anyone who says that the group of diseases called Neuroendocrine Neoplasms (the correct scientific term) is rare, is clearly out of touch with the latest incidence and prevalence data or chooses to ignore for their own agenda.
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. The zebra posse sharing zebra pictures between each other is not efficient awareness.
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 (they see this with many diseases, Neuroendocrine Neoplasms are not so special in this regard). Almost all will say they don’t need reminding that it might be an oddity, and that it is difficult to diagnose. They will definitely accept that some conditions are more difficult to diagnose than others and if you think about the fact 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 many cancers and many other illnesses. Many conditions are difficult to diagnose, and many are misdiagnosed for other things – yes this happens with Neuroendocrine Cancer too. Neuroendocrine Cancer is not as special in these areas as some people make out. Whilst we’re on that subject, please 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. It amazes me that the Neuroendocrine Cancer community uses this flawed (and outdated) information annually including alongside animal antics which dilutes what limited value they already have.
I also know that many people (including medical staff and patients) are both confused and incredulous at the Neuroendocrine Cancer community’s failure to ditch this out-of-date and single-issue awareness message. Some avoid the use of these animal gimmicks and then lapse their real beliefs on 10 Nov just to appear to fit in. However, that’s rather transparent and so people see right through it, like me they want these progressive organisations to stick to their principles. They tell me they don’t like the zebra model but then say a different thing to Zebra HQ and then join in with the ‘zebrafest’ on 10th November.
To quote one famous Neuroendocrine Cancer Specialist “….zebras …. we’re beyond that now”
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 and 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 jewelry all take precedence over genuine patient concerns on Facebook forums, i.e. it is hindering proper support for Neuroendocrine Cancer patients who are suffering because of this infatuation.
As one well known Neuroendocrine Cancer patient said, “unfortunately the community has become too cute with the icon”
He’s right, it is really holding us back. It’s a PR disaster.
I’m sure that earlier access to diagnostic testing (scanning in particular) will lead to earlier diagnosis, in fact, access to better scans is cited in the lasts SEER NET report as a factor resulting in increased incidence rates. That’s a resource/process issue rather than just a training/knowledge one. We need to work with doctors, not shoot them down for not knowing every minute fact about medicine. Neuroendocrine Cancer is much more likely to be diagnosed at secondary care and we should be equally or even more focused at that level.
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 NETs always present with years of vague symptoms and require several visits to a physician before a proper diagnosis is simply not true and is a myth. To suggest that an international patient survey of 5000 accurately represents the experience of hundreds of thousands, perhaps millions of NET patients out there is way off beam, particularly when the source of the survey patient cohort is taken from those affected most, those with the biggest issues. 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 savvier 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. I see undiagnosed patients every day on my social media very clued up, thanks to the rise of the online world, and I guarantee you they are (indirectly) educating their first-line medical staff when they reel off NET facts. 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.
To summarise ….. The first word of this post is “Opinion” but it is a pretty strong opinion as you would have gathered from the flow of the text. Everyone does indeed have a story and you only tend to hear the bad stories on NET patient forums. Additionally, newspapers love a bad story – they never print “cancer patient quickly diagnosed and treated for cancer – the end”. It’s a bit like in NET world, where the worst cases will be the majority constituents of any forum because they are looking for help and support. The biggest US forum has around 4000-5000 people but there are over 200,000 people living with Neuroendocrine Cancer in USA (i.e. not rare) and I can almost guarantee those figures don’t include many Neuroendocrine Carcinomas). There’s a similar quota in UK. I really believe the bad experiences you regularly see on Neuroendocrine Cancer patient forums are those who have issues, and this sends out an incorrect message to many. Unfortunately, most Neuroendocrine Cancer patient surveys are taken from these patients, so the statistics are totally skewed, presenting a false picture of reality. That’s not to say we ignore this section of the community, but we owe them a much better campaigning tool than the now outdated, unfashionable, and very inward-looking animal analogy.
Let’s move into the 21st century and get on with that.
Note: Since making my views clear, some organisations and individuals have chosen to “cancel” me …… yes, the cancel culture extends to cancer patient advocacy. And even patients who these organisations exist to support, can be cancelled – a modern scourge. However, this has backfired as I have been (and still am) accelerating my vocal and written reach and appear to be bigger than most on social media. Read between the lines if guilty.
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
Edited and checked April 2024 One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a ‘standard of care’
