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Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?


The papers and social media seem to be full of awareness and early diagnosis articles this month.  This coincided with world NET Cancer Day on 10 Nov and world Pancreatic Cancer day on 13 Nov.  Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types.  These issues also made it to the conventional media outlets of newspapers, radio and television.  Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of Pancreatic Cancer and I was struck by the similarities with NET Cancer. However what really caught my ear was Ali saying how important it was for individuals to think whether the symptoms they were experiencing were unusual for them.  Great advice and a reminder that the patient has a duty to help in their own diagnosis.   Ali also said to insist on seeing a doctor again if you felt something was still not right after the first visit.  Again, excellent advice on the basis it appears to have saved her life.   Click here for Ali’s interview

One other major story which caught my attention was the statement from NICE (National Institute for Health and Care Excellence) that they intend to update their guideline document “Suspected cancer: recognition and management of suspected cancer in children, young people and adults”.  The statement followed news of research which indicated up to 10,000 people in England could be dying each year due to late diagnoses. This research cited the reasons why cancer diagnoses may be missed and these included the fact that over 200 different types of cancer exist, each with different symptoms, and that patients present at their GP with symptoms which are non-specific.  Does that sound familiar to NET Cancer patients?

I found the NICE statement very interesting because in the 4 years I’ve been studying NET Cancer, I’ve never heard of these guidelines so thought I’d take a look.  No surprises that NET Cancer (or more specifically, Neuroendocrine Tumours or Carcinoid) was not mentioned as a condition.  I searched the entire 405-page document using the search terms ‘Neuroendocrine’, ‘Carcinoid’ and ‘flushing’ and only turned up a single reference to ‘Neuroendocrine’ within the children’s cancer section under Neuroblastoma.

The guidelines are constructed to look at cancer in terms of anatomy so I, therefore, looked at the most common place for a NET cancer – the small intestine.  Good time to refresh my view on this by reading blog post The Anatomy of NET Cancer. I was happy to find a section on cancers of the small intestine which it defines as “a rare cancer of the duodenum, jejunum or ileum, with different histological subtypes. Most GPs will not diagnose a case during their career. The rarity of this cancer means there are no relevant studies of its clinical features. It may have symptoms similar to those of stomach or colorectal cancers. The main method of diagnosis is by biopsy, which is performed in secondary care.”   That got me thinking that the target area for NET Cancer awareness campaigns in the UK might need to be focussed more on secondary rather than primary care?  Food for thought?

I then found a non-anatomy based section further on entitled “Recommendations for specific symptoms and signs” which then cross references to the potential cancers involved.   I was hoping to find something in there so I searched on the most common symptom of Carcinoid Syndrome (in most cases indicating an advanced carcinoid tumour) but there was no sign of the most common symptom of the most common type of NET Cancer.

It’s fantastic that NICE is updating its guidelines to provide the latest clinical and best practice advice to GPs.  I also read that they are encouraging GPs to refer more people to secondary care as another way of tackling the late diagnosis issue (particularly important for NET Cancer patients when you consider the NICE guidelines above) – see BBC News article 

It’s right that the more prevalent and more aggressive cancers be included as a priority in the NICE guidelines but NET Cancer is a notoriously misdiagnosed condition and people do die of this disease.  Additionally, many people have to live with a reduced quality of life due to the symptoms and side effects and this comes at great cost to health providers.  Perhaps the incidence rate of NET Cancer is still not high enough to merit mention in the NICE guidelines. Or perhaps there is still a general ignorance of these types of cancers in the ‘medical establishment’?

You can see a copy of these guidelines here although I suspect only UK-based patients will be really interested. Personally, I feel there could be a section specifically on Neuroendocrine Tumours as there are for other ‘systemic’ cancer types, perhaps with cross references to the various anatomy based sections in the document.  Consequently, I’ve emailed NICE asking if there is anything in the pipeline to include guidance on NET Cancers and I urge UK-based patients to do similar – their email is: nice@nice.org.uk

NET Cancer patients and their advocates have been pushing and pushing for more recognition and it appears in the UK, this will go on for some time. Whilst I recognise the positive moves above, it’s important that both primary and secondary care medical staff are alerted to the symptoms of NET Cancer and are able to spot these at an earlier stage.

NET Cancer patients need an early diagnosis, not early misdiagnosis!

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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Every day is NET Cancer Day!


every-day-is-net-cancer-day

In 2014, I experienced NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn’t really do that much for me. The build up to these events normally doesn’t start in earnest until around 3 months prior to 10 Nov. On or around this day, people meet up, patient conferences and support meetings are held, thousands of tweets and Facebook posts are published, people make and eat cakes, and money is raised. I suspect awareness of NET Cancer benefits but these things can quickly be forgotten outside the rather small world of NET Cancer patients, specialists, and advocates.

Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD MP in the UK Parliament

Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD MP in the UK Parliament

My 2014 experience was a memorable one where I and others met and lobbied our respective Members of Parliament at a NET Patient Foundation sponsored event.  I was also honoured to lobby side by side with my surgeon (Neil Pearce) who is also one of the Medical Trustees for the Foundation.  I felt that activity made a real difference and I was so enthused by this event, I decided to step up my own campaigning activity using my blog to push and push for more recognition of our disease.

When I consider the PR campaigns of other cancer types, I admit to being a tad envious. For example in the UK, breast, lung, bowel and prostate cancers probably have more awareness ‘value’ in a single week, than Neuroendocrine Cancer gets in a single year. However, these are the ‘big 4’ cancers and as a consequence attract a lot of support (and therefore resources) and are backed by government public health campaigns (e.g. in the UK, the ‘be clear on cancer’ campaign covers most of these cancers).  OK, they have a lot of resources but they focus on PEOPLE rather than icons and I firmly believe that is part of their success.

Because NET Cancer is a less common disease, the necessary ‘clout’ needs to be as wide as possible and this means international efforts to supplement national campaigns, particularly for awareness and recognition.  But the strategy needs to be coherent and effective?  Of course, we need to get patients on board because patient stories are vital, particularly (and accurately ….) in the national news and TV. Resources (people and cash) are always going to be an issue and some high-profile patients or ambassadors would be extremely useful but they tend not to want to get involved.  Read my Anatomy blog to understand more about the effects of this issue.

I strongly believe we need new audiences – nationally and internationally.  To be more attractive to the ‘outside’ and new audiences, we also need a convincing and compelling ‘line’.  By ‘line’ I don’t just mean an icon or a phrase, I mean a whole ‘PR’ package. It’s very difficult for rare and less common cancers to get high-profile and continuous publicity (sometimes, to be rare or less common is to be ignored).  Therefore, this ‘line’ needs to be something that captures people’s imaginations and persuades them to be associated with the cause. It also needs to avoid being too ‘introvert’ by using oblique, confusing, outdated, single issue icons conveyed by memes. New audiences means new thinking ….. different thinking.

In terms of my own efforts, I’ve established a Neuroendocrine Cancer ‘footprint’ on the internet in a relatively short space of time.  My blog is now appearing in many searches – statistically, search engines now account for 11% of my views, second only to my Facebook page which is a whopping 40% – thus why I push this outlet a lot!  My ‘digital footprint’ was found by Ipsen who then invited me to a patient workshop in Paris asking for patient input to their website plans (see picture below). I’ve also presented patient-centered presentations to Ipsen HQ in Paris and their Germany HQ.  Guest and featured blog opportunities are on the increase and you can see the results of some of these on the blog home page, along with some nice comments received from readers.  With your help, I was able to get to the final of the annual 2016 WEGO Health Activist Best Blog and Best Community Awards, going on to win the Best Community.  That means YOU won the award too!

Ronny Allan - AKA NET Cancer Blog

Ronny Allan – AKA NET Cancer Blog – speaking at Ipsen Week 2016

This time in 2014 my blog viewing figures were modest.  I currently stand at around 267,000 hits and 134,000 visitors (Apr 2017).  I will tip over a third of a million hits by the end of 2017. My Facebook site is now the main ‘front’ for my blog. However, it’s turning out to be something greater than that having attracted around 4500 subscribers (Apr 2017) in a relatively short period. If you know anyone who would benefit or be interested, please recommend my blog Facebook page. The bigger it is, the more chance I will have to attract the new audiences I mentioned above.

Using my Facebook page, I generated a ‘virtual’ 2016 NET Cancer Day event which attracted 47,000 views with around  7,000 people invited.  Join the 2017 event here and feel free to invite others:  Every day is NET Cancer Day

My 2-year-old NET Cancer Awareness twitter account is heading towards 3,000 genuine followers – my personal twitter account is heading for 4,000 followers. Both of these accounts also function as fronts for my blog but are also used for many other activities – mostly campaigning, awareness and finding new audiences, e.g. I also support many other cancers on these accounts which is resulting in support coming the other way. This is, therefore, a method of generating awareness of Neuroendocrine Cancer to ‘external’ organisations by talking about patient experiences and patient views without resorting to legacy NET messages.  The twitter post below is the most tweeted post about NET Cancer in the history of NET Cancer awareness.  Twitter now accounts for 6% of my blog hits, the third biggest source.  This is supplemented by my twitter newsletter which you can now receive without being on twitter – sign up here:  Ronny Allan twitter newsletter

I’m constantly reviewing my strategy hoping to maintain momentum. I’ve also had to drop some of my other commitments in order to give it the correct focus. I’m now finding a lot more contact from non-NET people who approach me rather than the other way round. You can support my awareness campaigns on Facebook, twitter, Pinterest and my top campaigns are found here (click here).  If you want to see some of my favourite pictures from places I’ve been or want to go, please check out my Instagram Pagehere

When I set my blog up on 29 Apr 2014, I never imagined for one second it would be anything other than an obscure and niche site getting a couple of hits per day. I’m therefore really grateful to those who are supporting me including my most recent followers. It’s your support that inspires me to write the posts and then offer them up as awareness messages or simply words to help patients. Now, not a day goes by where I have not tweeted or posted something about Neuroendocrine Cancer.  Although 10 Nov is approaching once again, for me……..

EVERY SINGLE DAY OF THE YEAR IS NET CANCER DAY

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Thanks for reading

Ronny Allan

I’m also active on Facebook.  Like my page for even more news.

Disclaimer
My Diagnosis and Treatment History
Most Popular Posts

I woke up on NET Cancer day


C&R at Planets (2)

what I mainly remember was my wife Chris holding my hand which gave me a great deal of much-needed comfort and security

It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9 hour surgery – the first of what was to be several visits to an operating theatre.  The last thing I remembered before going ‘under’ was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained by the dozen or so ‘connections’ to my body. However, what I mainly remember was my wife Chris holding my hand which gave me a great deal of much-needed comfort and security.

The build up to this day began on 26 July 2010 when I was given the news that I had metastatic Neuroendocrine Tumours and that the prognosis without any treatment wasn’t good.  A liver biopsy graded one liver tumour sample at Ki-67 5+. I told my Oncologist to ‘crack on’ with whatever treatment would be required.

However, it wasn’t that easy and as I was yet to find out, Neuroendocrine Cancer isn’t a simple disease. I first had to undergo a plethora of other tests including specialist scans, blood and urine. The specialist scans (crucially) confirmed my tumours were ‘avid’ to a substance known as Octreotide which is a type of drug called a somatostatin analogue. The scan also confirmed I had more tumours than initially thought.  This was key to working out my treatment plan.

When I presented in July 2010, Although I hadn’t realised, I was showing symptoms of carcinoid syndrome although mainly flushing but thinking back, there was some diarrhea albiet infrequent.  The subsequent specialist blood and urine tests (CgA and 5HIAA respectively) were way out of range confirming the diagnosis.  The elevated readings were due to the tumour bulk and excessive secretion of specific hormones which is one of the facets of metastatic carcinoid.  Thus why I had to be established on a ‘somatostatin analogue’ which is designed to inhibit the excessive secretion.  I self-injected Octreotide daily for 2 months until the flushing was under control. When Carcinoid tumours cause carcinoid syndrome, there is a risk of a phenomenon known as ‘Carcinoid Crisis’.  This is the immediate onset of debilitating and life-threatening symptoms that can be triggered by a number of events including anaesthesia. As an additional precaution to prevent such complications, I was admitted on the 8th November 2010 in order to have an ‘Octreotide soak’ (Octreotide on a drip) prior to the surgery on 9th November 2010.

As is normal for such procedures, I had the risks explained to me.  There seemed to be a lot of risks on the list and my surgeon, Mr Neil Pearce, carefully explained each one.  Death was on the list but I was happy to hear he had a 100% record on his ‘table’. Trust is an extremely important word when you’re in this situation.

As a snub to cancer, I refused the offer of a wheelchair and chose to walk to the operating theatre at 2.00-2.30pm – about 3 hours later than planned (it was worth the wait because I’m still here!).  So together with my ‘drip fed’ Octreotide trolley and wearing my surgical stockings and gown (carefully fastened at the rear!), I wandered down to the operating theatre with my nurse.

The 9-hour operation was designed to debulk what was described as “extensive intra-abdominal neuroendocrine disease”.  The operation comprised the removal of 3 feet of small intestine at the terminal ileum plus a right hemicolectomy, a mesenteric root dissection taking out the nodes on the superior mesenteric artery and a mesenteric vein reconstruction.  With the assistance of a vascular surgeon, my NET surgeon also dissected out a dense fibrotic retro-peritoneal reaction which had encircled my aorta and cava below the level of the superior mesenteric artery.  Thank goodness I was asleep 🙂

In those days, I had no idea that 10th November was NET Cancer Day. Some 6 years later I not only celebrate the fact that I woke up on this date after my first major surgery but that I have also woken up to the idea and inspiration behind NET Cancer Day!

However, for me now, EVERY DAY IS NET CANCER DAY

 

 

Thanks for reading
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The Human Anatomy of Neuroendocrine Cancer


famous-net-patients-x-5-collageSometimes 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 NET Cancer 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 NET 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.  However the biopsy confirmed NET Cancer.  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 body.  Neuroendocrine 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 NET Cancers really need NET specialist medical teams (although there are certain Grade 3 NETs (Carcinomas) which I suspect on occasion may require external experts in conjunction with NET specialists).

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”.

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.

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).

They are not alone, the most famous NET Cancer 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.

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.

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 fundraising for the wrong type of cancer in addition to the misdirected awareness messages.

Let me add that this is not an attempt to bash 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 most well-known Neuroendocrine Cancer patient was so famous, thousand of articles were written about him when he 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.  The same thing is now happening with 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

However, the more stories and articles like this one, the more we can counter the onslaught of incorrect articles which are denying our cancer the publicity we deserve. The share button is below.

Thanks for reading

Ronny Allan

I’m also active on Facebook.  Like my page for even more news.

Disclaimer
My Diagnosis and Treatment History

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