Make some noise for a silent cancer


can be silent

One of the key aims of my blog is to create more awareness of Neuroendocrine Cancer (or NETs), its peculiarities, its effects, its ability to deceive, its ability to kill if left undetected and/or untreated; and its impact on Quality of Life (QoL). There are millions of people out there doing similar with thousands of other conditions. That means even to stand out a little, messages must be compelling, must attract attention; and must catch people’s interest.

In the last 36 months, I’ve generated a few ‘different’ awareness campaigns, some of which have been more successful than others and I learn from this.  One of them is actually now the most tweeted post about NETs on twitter.  Fortunately, I have had significant help from YOU because if you did not share my posts and blogs, they would not have the potential reach they currently do and would not, therefore, attract the new audiences I’m looking for (….and finding!). The same applies to Facebook, twitter and other parts of the social media universe.  I thank you all for the help to date.  However, the job is far from finished!

My main campaigns are listed here so please help yourself to the ones you like and feel free to support or sponsor.  Please note there are social media sharing buttons at the bottom of each post – or just simple cut and paste as required.

 

ignore-this-post

Neuroendocrine Cancer would love you to ignore this post.   This is a reverse psychology message which is designed to attract attention – and it does!.  It is currently the most tweeted post in the history of NET Cancer awareness.   If you are on twitter, please retweet the original post (quoting it in a new post is also great but please also retweet the original).  The tweet can be found by clicking here.  It’s also a great awareness post for any type of social media so please share as it gives a really simple and yet compelling awareness message about the danger of NET Cancer and ignoring symptoms, including after diagnosis.  Click here then share.

 

it-takes-guts-living-with4.jpg

Living with Neuroendocrine Cancer – it takes guts! This is a powerful message which lets people know what effects the consequences of Neuroendocrine Cancer and its treatment have on people’s lives. It’s not a pity party – I don’t do those (as you well know).

I also emphasise that it’s not all about diagnostic difficulties (as important as that might be), more focus needs to be placed on LIVING with NETs given that it is a highly prevalent cancer, and no longer rare.

The diagnostic angle was relevant 10 years ago but the focus needs to become much wider thus why the community needs to shift from the ‘same old same old’ to a ‘different new’. This post has attracted much interest from new audiences in the wider healthcare world. Read and share it by clicking here


sshh - can you hear it?

Neuroendocrine Cancer – ssh! Can you hear it?  This is the NETs is ‘silent’ theme and attracts a lot of support.  This really drives home the devious nature of NETs, the fact that it can be a very silent cancer until it’s too late and the difficulties that it presents with accurate diagnoses and subsequent ongoing monitoring.  The post can be found by clicking here

 

The Human Anatomy of Neuroendocrine Cancer

The Human Anatomy of Neuroendocrine Cancer This is a campaign to point out that NET Cancer is not confined to a particular part of the body and raises the issue of misdiagnosis, incorrect naming and recording of cancer types; and the loss of awareness opportunities, particularly when famous people are involved.  I never get fed up of sharing this one and it cannot be shared too many times!  Please feel free to share the hell out of this one.  The post can be found by clicking here

 

Early signs of a late diagnosis (2)

Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis

This is an awareness message to emphasize that there are a number of different syndromes involved in NETs in different parts of the body and that terminology and understanding is important to get the awareness messages right.  Click here.

 

 

Every day is NET Cancer DayEvery day is NET Cancer Day.  This post has had the largest number of 5 star ratings input by readers indicating support for my awareness strategy.   Don’t get me wrong, 10 Nov is special but the other 364 days also present awareness opportunities. You can read this blog by clicking hereYou can also register for my NET Cancer Day Social Media Event leading up to 10 Nov by clicking here and select ‘Going’ (then invite others please). On this event, Every Day is NET Cancer Day!

 

lets raise our sites

Let’s raise our ‘sites’. This awareness message also emphasizes the anatomy of NETs and the importance of the correct terminology in order to get the optimum and accurate awareness messages over.  I’m using the word ‘sites’ as a take on ‘sights’ – someone picked me up for spelling last time I posted!  Click here to read.

 

Neuroendocrine Cancer:  Normally Slow but Always Sneaky.   Very powerful message, scary but designed for external audiences.  My most read article with over 20,000 views in a year.

cancer-rates

 

Neuroendocrine Cancer is NOT a ‘type’ of another cancer …. PERIOD.  The anatomy of cancer works against us so we need to really drive this message home.  We lose a lot of publicity, resources, supporters and potential funding because of this misunderstanding.

A Neuroendocrine Tumour is NOT

 

The 9 posts above comprise around 20% of my total blog hits and these are the ones which are attracting new audiences who now know about Neuroendocrine Cancer and are telling others.  Please help me build on this.

Neuroendocrine Cancer can be silent but we shouldn’t be!

 

Stay well all

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

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

If on twitter, please retweet this tweet   

 

Neuroendocrine Cancer – the devil is in the detail

Nick Robinson BBC
Nick Robinson BBC

Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day.

Like a lot of people, Nick’s life changed when he was diagnosed with Cancer in Feb 2015. A self-confessed workaholic, he is now hoping to live a more balanced life after surviving lung cancer according to an article in the Sunday Times this weekend.

He assumes the post vacated by James Naughtie, an extremely hard act to follow – a man who would frequently sink his teeth into a politician’s leg and not let go until he got an answer – or at the very least he would paint them into an embarrassing corner. It’s a tough job as most politicians are extremely wily characters, masters of ‘double speak‘ and expert in answering a question without getting into the detail the questioner wants.  As we all know, the devil is in the detail.

Although the article introduces some new facts about his cancer experience, I was really looking for more detail.  That said, even without the ‘devil’, the latest article is inspiring for most (….man goes back to work after a tough fight with Cancer).

So why am I so interested in the detail of Nick’s Cancer? Simple – because he does not have Lung Cancer as frequently and widely reported in the media. Lung Cancer is the ‘politician’s answer‘ or the ‘double speak answer’ to avoid going into complicated detail. The correct answer is he has Neuroendocrine Cancer with a Lung Primary.

I’d really like to turn the tables and interview Nick, we seem to have so much in common. We are both self-confessed workaholics, we both went to an annual Asthma clinic, we both told our Asthma nurses we had lost weight and we both were sent for a scan as a result. Following our scans, we were both diagnosed with Neuroendocrine Cancer.  Like Nick, I also have an interest in politics but wouldn’t make a good one due to my love of detail and hate of ‘double speak‘.

This is not a new problem for Neuroendocrine Cancer.  The most famous of patients is the Apple founder and now deceased Steve Jobs.  He is frequently (even to this day) reported to have had Pancreatic Cancer rather than Neuroendocrine Cancer of the Pancreas (an Insulinoma to be precise).  Although not as famous as Jobs, UK musician Wilko Johnson (of Dr Feelgood fame) is a similar story. I touched on this dilemma in my article The Human Anatomy of Neuroendocrine Cancer.

Nick – good luck with the new job.  By the way, it’s really OK to say you have Neuroendocrine Cancer!

 

You can read the full article here if you have a Times subscription.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

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

The Human Anatomy of Neuroendocrine Cancer

The Human Anatomy of Neuroendocrine Cancer

OPINION.  Sometimes when I’m searching for cancer information, I’m presented with a ‘pick-list’ of types which mostly tend to be anatomy based.  I do find it annoying when I cannot find my own cancer on the list …..some respectable organisations are just not as up to date as they should be!  I can now totally understand why so many Neuroendocrine Tumour (NET) patients have become their own advocates and why they have to shout quite loud for recognition and understanding.

One of the key facets of NETs is that it is not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast cancer where the primary can be found in the breast, neuroendocrine tumours arise from a cell type which can be present more or less anywhere in the body.  Ignorance of this fact can at best lead to misinformation and confusion about Neuroendocrine Cancer – at worst, misdiagnosis and unnecessary treatment for something else (including a different type of cancer in the same location – see below for an example). Take my own diagnosis phase. When I look at the radiology reports produced prior to diagnosis, there were mentions of ‘peri-aortic lymphadenopathy’, ‘mass in the small bowel mesentery’, ‘multiple liver lesions’, ‘retro-peritoneal fibrosis’, ‘extensive lymphadenopathy consistent with lymphoma or metastatic adenocarcinoma’. You can see from the mostly generalised wording, there was some scope for confusion given that 3 potential cancers were mentioned in one paragraph.  However the biopsy confirmed NETs.  That is what is now documented, that is what I tell people I have and that is what I’m treated for.

The point I’m making here is that certain cancers can appear almost anywhere in the bodyNeuroendocrine Cancer is one of those. For example, a Neuroendocrine Tumour which originates in the intestines isn’t Bowel or Colon cancer. Similarly one which originates in the (say) Pancreas or Lung should not be confused with ‘core’ Pancreatic or Lung cancers. These are all histopathologically different cancers to NETs, they arise from different cells and the presentation, testing, treatment (curative or palliative) and prognosis can be very different.  At worst, the wrong treatment will shorten the patients life.  This is another key point as Neuroendocrine Cancers really need NET specialist medical teams (although there are certain types which I suspect on occasion may require external experts in conjunction with NET specialists).

A Neuroendocrine Tumour is NOT

Take the quite recent case in the news about Wilko Johnson, a well known R&B musician who was told he had Pancreatic Cancer and would die within 10 months.  But a friend (a doctor) became curious as to why he wasn’t dead after 10 months and why he wasn’t even feeling ill!  It was then discovered he had a NET, i.e. he had a Neuroendocrine rather than exocrine based cancer of the pancreas. So he went from dying to living (albeit living with the consequences of the cancer). Of course the newspapers even today continue to report he has “Pancreatic Cancer”.  Read his amazing story by clicking here.

And then there is the famous Nick Robinson BBC political reporter who is frequently reported to have “Lung Cancer” when in actual fact he has Neuroendocrine Cancer with a Lung primary.  Read his story by clicking here.

Dave Thomas the founder of Wendy’s Hamburger Chain had a Neuroendocrine Tumour but many newspaper reports said he died of liver cancer. Whilst they got the detail of the cancer correct, the ‘headline’ location is technically wrong as the liver was a metastasis (a secondary location). This robs us of vital awareness messages due to the ‘headline reading only population’.

They are not alone, the most famous NET patient is the late Steve Jobs (the founder of Apple).  To this day, it is frequently reported he had “Pancreatic Cancer” when in fact he had a Neuroendocrine Cancer with a primary in the Pancreas.  I see this error repeated weekly in my news alerts plus with many other diagnosed patients.  Read a very details Steve Jobs story by clicking here.

However, on 16th August 2018, some might say a person more famous than Jobs was diagnosed with Neuroendocrine Tumors (pancreatic primary). Aretha Franklin was initially diagnosed in 2010, other than pancreatic primary, other details are scant as she wanted to keep her condition private.  However, the media exploded with claims she died of Pancreatic Cancer, although several outlets did mention it was the ‘Neuroendocrine type’ and many left that bit out.  Although this left a little door open for Neuroendocrine awareness, the community faces a very difficult task in regaining the high ground and it is looking like ‘Steve Jobs’ all over again as the news went viral.  That said, it appears her death certificate does confirm Neuroendocrine Cancer.  Read more by clicking here.

On 13 Jan 2017, it was announced that Siri Co-Founder Dag Kittlaus has Pancreatic Cancer. Although the detail said Pancreatic Neuroendocrine Tumor, it is still a misleading statement and once again, the headline reading population receive only the Pancreatic Cancer message.

There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more. 

pancreatic vs neuroendocrine

I’ve also lost count of the number of times I’ve read regional and national patient stories where the headlines mentioned various parts of the anatomy only to find it was a Neuroendocrine Tumour in the detail.  Frustratingly, many of these articles are also fundraising for the wrong type of cancer in addition to the misdirected awareness messages.

The most well-known Neuroendocrine Cancer patients are so famous, thousand of articles were written about them when they died and continue to this day. These articles are ingrained in the bowels of the web and in books – many people will use them as research to reference in their own articles.  This issue will continue for many years.  

The same thing is now happening with UK celebrities Nick Robinson and Wilko Johnson to a certain extent (although Neuroendocrine is starting to creep into their vocabulary).  I have in fact had an online chat with Wilko Johnson who said he would help with Neuroendocrine publicity (not yet seen though).  Check out the conversation here:

wilko-response
Let me add that this is not an attempt to bash Aretha Franklin, Steve Jobs, Nick Robinson, Wilko Johnson, Dag Kittlaus or any patient, or any patient advocate organisation who have been recipients of cash raised for a different cancer. I believe patients mostly only say what their doctors say to them in terms of cancer type.

The power of social media will help to dilute the incorrect publishing of celebrities with the wrong cancer types, a particularly disadvantage for Neuroendocrine Cancer.  The more stories and articles like this one, the more we can do to counter the onslaught of incorrect articles which are denying our cancer the publicity we deserve. The share button is below.