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

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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 – 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 20 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.

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 but sharing quite ridiculous pictures of animals that will only be shared by patients is NOT real awareness. In fact, and 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 conditions 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 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. 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 including alongside animal antics which degrades what limited value they already have.

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.  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.

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 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 NET patients – NET patients are suffering because of this infatuation.

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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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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The trouble with the ‘NET’ – Part 1 – Cancer Myths

The trouble with the ‘NET’ Part 1

Certain popular ideas about how cancer starts and spreads – though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions.

In a study published last month, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey.  In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news.  Unfortunately social media ‘misinformation’ includes ‘alleged’ cures for various ailments including cancer.  I think we’ve all been there, we check twitter, Facebook, Pinterest etc and we find the ubiquitous miracle cures for every illness under the sun.  Easy to find, easy to read and worryingly, easy to share.  Surely these cures must be true, after all…..it’s on the ‘NET’.

Has wide access to the internet exacerbated this problem? 

The rise of the (Inter)NET has allowed people to use ‘social technology’ to help shape the world’s events and culture. Additionally, the NET has increased the speed of how relationships develop, the way information is shared and (whether you like it or not) how influence can be leveraged for gain.  Facebook has taught us new ways to communicate and collaborate through features like feeds, profiles and groups. At the same time, smartphones and tablets provide mobile and instantaneous access to information from any location.  Whether you like it or not, we are witnessing the power of social media and its effect on society. However, the ‘NET’ can also provide ‘misinformation’ and it’s pretty good at it. 

When I was diagnosed with metastatic Neuroendocrine Tumours (aka ‘NETs’) in 2010, I took to the ‘NET’ to find out about my ‘NETs’ 🙂  However, I soon found out the NET is potentially more dangerous than my NETs.  Put a foot in the wrong place and ‘boom’. Not only can you get easily lost but you end up with dubious information which looks pretty credible. Moreover, in some cases this can be unnecessarily stressful and upsetting for some.  Fortunately I had worked with information technology for years and combined with my sceptical but inquisitive nature, I was able to overcome this problem.  I’m very careful where I look and now use that to my advantage, along with many other savvy cancer patients.  

The champion ‘myth busters’ are the world-renowned Cancer Research UK and I always go there when I see something in the media which sounds too good to be true. For example, there is a 20 year old myth that sugar feeds cancer cells and this seems to be shared by many patients as something which looks true.  It is NOT true and the biggest cancer advocate organisations will all confirm this.  Although research has shown that cancer cells consume more sugar (glucose) than normal cells, no studies have shown that eating sugar will make your cancer worse or that, if you stop eating sugar, your cancer will shrink or disappear.  However, a high-sugar diet may contribute to excess weight gain, and obesity is associated with an increased risk of developing several types of cancer – that is a totally different problem. This is one of a number of cancer myths that seem to continuously patrol the NET, including on patient forums. Take a look at Cancer Research UK’s ‘Don’t believe the hype – 10 cancer myths debunked’.  Whilst you’re there, take a look at their Science blog as they always follow up the most recent headline grabbing newspaper articles claiming to have found the cure for cancer (again).  Cancer Research UK will always provide balanced commentary on these claims.

Cancer Research UK is not alone in trying to help dispel some of these myths – you can also fact check on the big US site Cancer.Gov – see their myth busting article here.

I also like the list from Cancer.NET – American Society of Clinical Oncology (ASCO) – read it here.  (Science Fact or Science Fiction)

You may also enjoy:

Alternative Therapy risks (or lack of) click here

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“But it works… I read it in the news!”

Miracle Curesclick here

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Hope is great, false hope is not.

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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Tobacco and Cancer: A smoking gun?

cancer smokingI’ve never smoked so I’m reasonably confident my own cancer experience is not related to this type of personal lifestyle.  I did, however, grow up in a world where smoking was widespread and a generally accepted behaviour.

We now know that smoking causes more than four in five cases of lung cancer. Lung cancer not only has one of the lowest survival rates of all cancers, but is the most common cause of cancer death in the UK.  Shockingly, most of these deaths are preventable, by giving up smoking in time or not starting at all.

Smoking also increases the risk of at least 13 other cancers including the larynx (voice box), oesophagus (gullet), mouth and pharynx (throat), bladder, pancreas, kidney, liver, stomach, bowel, cervix, ovary, nose and sinus, and some types of leukaemia. There is also some evidence that smoking could increase the risk of breast cancer.  The anatomy is pretty well covered by the risk of smoking.

I haven’t seen any evidence that smoking increases the risk of Neuroendocrine Tumours (NETs) in the relevant parts of the anatomy listed above but I wouldn’t be surprised if there was a connection or at least an increased risk with certain types and/or locations of NETs.  Although years of  research have proven that smoking causes cancer, this doesn’t mean that all smokers will definitely get cancer or that all non-smokers won’t. It means that smoking greatly increases the risk of this disease. Smokers are, on average, much more likely to get cancer than non-smokers.

One of my other activities outside of NET Cancer awareness and support work, is my role as a Cancer Research UK Campaigns Ambassador for New Forest West (a UK Parliament constituency in West Hampshire on the border with Dorset).   Through this task, which I support in my own time for free, I’ve been helping Cancer Research UK with their various campaigns, in particular, the one to introduce standard tobacco packaging into the UK.  Evidence shows that removing all branding and design from tobacco packs makes it less attractive for both adults and children. This is a controversial measure opposed by the tobacco industry and their sponsors. However, it was voted through by the UK Parliament early this year and is currently in a consultation phase.  The general election may delay its introduction as law but hopefully this will become a reality in 2015.  Clearly the tobacco industry is involved in rearguard actions ‘as we speak’.

When I was given the campaign material to read in Dec 2013, I was totally shocked by some of the statistics provided:

  • Since tobacco advertising became illegal in the UK in 2002, tobacco companies have invested a fortune in branded packaging to attract new smokers, particularly younger people;
  • Around 207,000 children aged 11-15 start smoking in the UK every year (6,900 classrooms worth).  This means that nearly 570 children are lighting up and becoming smokers for the first time every day. Addiction keeps them smoking into adulthood, where it then kills one in two long-term users;
  • Two thirds of new smokers start before they are 18 and the vast majority while still teenagers;
  • Smoking-related diseases kill over 100,000 people in the UK every year.  Worldwide the figure is 6,000,000 and projected to rise to 8,000,000 by 2030.
  • Tobacco use caused 100 million deaths worldwide during the 20th century, and if current trends continue it will kill 1 billion people in the 21st century.

plain_packs_620_x_348Standardised tobacco packaging (sometimes known as plain packaging), is not a UK initiative.  Australia was the first country in the world to introduce standardised packaging for tobacco products in December 2012 and have since reported the biggest fall in smoking for 2 decades.  In addition to the UK, New Zealand and Ireland are working on similar legislation. Other countries are considering or have committed to some action including France, EU, Norway, Canada, India and Turkey.  Countries said to be opposing such measures include USA, Italy, Bulgaria, the Czech Republic, Greece, Poland, Portugal, Romania, Slovakia and Spain.

You can read more about standardised tobacco packaging at this link here: http://www.cancerresearchuk.org/support-us/campaign-for-us/setting-the-standard-for-plain-cigarette-packaging/evidence-and

For UK nationals, you can help keep the pressure on the government to introduce the legislation quicker by emailing your Member of Parliament – see button labelled ‘Email your MP’ within the above link.

For other readers, you will probably find similar campaigns in your own national organisations and I recommend you read what they have to say.

Thank you for reading! I would love to hear your feedback on this issue so fire away!

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Finally, please note this post contains my own views and opinions.  It does not necessarily reflect the views or opinions of any Cancer or Charity organisation with which I’m associated.