Opinion: Neuroendocrine Cancer Awareness – let’s move into the 21st century


hoofbeats

OPINION

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, more likely 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.  “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 20 years ago…..).

I’m not suggesting those who are destined to be diagnosed with an ‘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.  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 doctors is perhaps not the way to win friends and influence the people we need to work with in helping diagnose quicker.

Moreover, 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 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.

The use of this skewed version of the phrase might be a great ‘rallying cry’ within the NET Cancer community and for some a ‘populist’ Facebook ‘like farming’ scheme.  Sharing quite ridiculous pictures of animals that will only be shared by patients is NOT really 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”

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 cancers which quite often leads to confusion.

4.  Relevance. The term is inextricably linked to rare diseases and as we all now know, NETs are no longer rare. Anyone who says that the group of diseases called Neuroendocrine Tumors (or Neuroendocrine Neoplasms to use 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 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. 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 NETs too.  NETs are 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 NET community uses this flawed (and outdated) information annually.

I also know that many people (including medical staff and patients) are both confused and incredulous at the NET communities failure to ditch this out of date and single issue awareness message.

To quote one famous NET 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, 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 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. 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. NET 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 NET Cancer always presents with years of vague symptoms and requires 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 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 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.  I see undiagnosed patients every day on my social media very clued up, thanks 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 people but there are over 200,000 people living with NETs in USA (i.e. not rare). There’s a similar quota in UK. I really believe the bad experiences you regularly see on NET forums are the extreme cases (the minority). Unfortunately, most NET 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.

Thanks for reading

Ronny

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32 thoughts on “Opinion: Neuroendocrine Cancer Awareness – let’s move into the 21st century”

  1. I love your article. After being diagnosed 2 years ago, I have been reading everything I can get my hands on. My GP diagnosed me after running a bunch of tests and of course I was referred to my oncologist. She (my GP) still keeps in touch and wants to learn as much about this as possible. It’s the same with my oncologist. He never doubts my “complaints” /symptoms.
    I am conflicted about sharing my health information, because I don’t want it to define me. I have good and bad days. Mine is located deep in my small intestine and inoperable. (Therefore no biopsy ). So my diagnosis is neuroendocrine tumor of uncertain behavior. I have scans every 6 months and see my doctor every 3 months. I have a sandostatin shot every 28 days. So far so good.
    I have had a good experience with my doctors. It saddens me to read so many have to fight for years to be diagnosed and treated poorly by their doctors.
    I love reading your articles Ronny..keep up the good work


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  2. I think everyone has their own story. It was definitely a lack of knowledge from the GP and hospital that left my husbands net undetected for too long.Although many of his symptoms were typical of cancer, they completely chose to dimiss the need for a scan and continue with exploratory procedures and blood tests, just because the usual markers for any abnormalities seemed normal. A simple ultrasound uncovered the cancer. We were then subject to many meeting with doctors and nurses that were red faced and apologetic. We all feel we need to belong, some are happy watching and some doing. Social media is huge and offers a wide choice of places to belong.

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    1. Sorry you guys had to go through that. 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. 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 people but there are over 200,000 people living with NETs in USA (i.e. not rare). There’s a similar quota in UK. I really believe the bad experiences you regularly see on NET forums are the extreme cases (the minority). Unfortunately, most NET 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.

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  3. 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

    1. 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.

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  4. “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

  5. 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.

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  6. 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

    1. The butterfly (or moth?) is what NET Patient Foundation use and the Australians use the Unicorn. However, they don’t plaster it all over the place replacing patients with butterflies or unicorns talking down to doctors. It isn’t a PR strategy going forward for a group of cancers which IMHO are no longer rare. You probably need to read a couple of my blogs as I can sometimes be intentionally vague in order to stay close to the middle ground. Best of luck with your blog – it’s a tough game!

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  7. 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.

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    1. I do agree something with more impact is needed. Did you have ideas or examples of others? I would like to see them if you have. I have a background in art/photoshop/photography etc. Maybe we can stir the pot? 🙂

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    1. 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

      1. 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.

        EDIT 19 FEB 2018. The prevalence of NETs in USA is now over 200,000. i.e. not rare. People need to get past the denial phase.

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  8. 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. 🙂

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  9. 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

      1. I think we’re in a bubble and the audience for zebra cartoon animals is internal. We need to move NET Cancer into mainstream cancer circles to gain new audiences. Cartoon animals is not the way to do this.

        Liked by 1 person

  10. 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

  11. 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.

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