The build up to NET Cancer Day on 10 Nov has begun and I can hear the sound of hoofbeats getting louder every day. Is it a horse, is it a zebra etc etc. However, is this old equine medical adage still applicable as an awareness tool for Neuroendocrine Cancer or should we be looking for something more modern, impactful and compelling?
For those unaware, the term 'Zebra' is an American medical slang for arriving at an exotic medical diagnosis when a more commonplace explanation is more likely - thus the term "When you hear hoofbeats, think of horses not zebras". This might be great within the community but in my opinion, externally we need a much slicker and human front. When I analyse the main NET organisation websites across the various countries, I can see 'corporately' the Zebra icon is not universally accepted. I read that as me not being alone in my thinking. Incidentally, the term Zebra is not exclusively used by the Neuroendocrine Cancer community, it can be and is used by other cancers.
It's no secret that my strategy is to put Neuroendocrine Cancer patients at the forefront of my personal campaigns. I've also 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 much 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.
Here's my beef. If you speak to any 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. This is particularly the case at primary care level where they only have a finite time to see a patient at presentation. Let's be realistic, very few people are going to be diagnosed with Neuroendocrine Cancer at their very first primary care visit.
You might also take a view that if doctors focussed on the 'zebras', it is likely those with regular diseases (horses) could be missed and many more people will suffer as a result. 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 proverbial and medical terms - thus why the saying was invented in the first place. I think what I'm also saying is that perhaps we should stop 'beating up' and potentially insulting medical staff using the zebra analogy in our PR. In my opinion, I'm afraid cartoon zebras looking sanctimoniously down on doctors is perhaps not the way to win friends and influence people.
I know I was luckier with my diagnosis than most but let me quickly recount that as I'm fairly certain my sequence of events (not the symptoms) is more common than you might think. 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 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 (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.
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. By the way, it isn't as rare as you think.
Ronny
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