Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors.
About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said “Pancreatic Cancer of the Neuroendocrine Type”. Her death certificate quoted “Pancreatic Neuroendocrine Cancer”. Despite this, the media outlet which published her death certificate still led the article with the headline “Pancreatic Cancer”. Exactly the same thing happened with Steve Jobs and a few others. And that’s only the ones we know about – how many other pe0ple are being labelled and documented with the wrong cancer type?
I cannot read the minds of the healthcare professionals and media when they compile their press releases and articles but I’m fairly certain they simply do not understand that Neuroendocrine Cancer is a cancer within its own right and is not a type of another cancer. They simply do not understand the term ‘Neuroendocrine’ and they think the readership won’t either, and so it’s probably easer just to leave that bit out. The result is that a person has, or dies with, is labelled with the wrong cancer type, which is then published and embedded into the annals of the internet and spreads like wildfire (fake news), and Neuroendocrine Cancer is once again robbed of much needed awareness. Our community needs to start focusing more on these types of awareness issues rather than continually flaunting pictures of black and white striped animals.
I’m even starting to think that the well known term used in Neuroendocrine Cancer circles, ‘Pancreatic Neuroendocrine Tumor’ or pNET for short, is actually working against us because of the inclusion of the organ as the first word of the term. Going forward, I will be using Neuroendocrine Cancer with a pancreatic primary, etc.
Neuroendocrine Cancer is NOT a type of another cancer PERIOD!
Almost every day I see something in my news feed about Neuroendocrine Cancer …. an article, a tweet, a blog post, a subscription, an alert of some kind. Certain ones catch my eye and then something in the detail leads me to disappointment at the realisation I’d not be able to share the information because of a major flaw. A common flaw is the failure to recognise that Neuroendocrine Neoplasms (Carcinomas and Tumors) can be found in numerous SITES in the human anatomy. The latest article I read about Steve Jobs was a good read until I noticed it was actually about Pancreatic Cancer and inferred that a pancreatic NET was a subtype of Pancreatic Cancer. I spend a lot of time supporting Pancreatic Cancer because they really need the support, but we do too. The latest celebrity death, Aretha Franklin, has not helped Neuroendocrine Cancer in an awareness sense. There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more.
Of course, there is a trend with famous NET patients being labelled with something else and I outlined this issue in my post “The Human Anatomy of Neuroendocrine Cancer” which already has over 20,000 hits. We need to keep clawing back some of that lost awareness. And we need to continue to emphasise that Neuroendocrine Cancer is NOT a type of another cancer PERIOD. Click here and share please!
I once told a story in a post called “Neuroendocrine – what’s that?“, about my own experience in communicating the details of my condition. To cut a long story short, as soon as I mention my primary SITE was in the ‘intestine’, people assume I have some kind of bowel cancer. Cue – a careful explanation which doubles up as awareness.
Our situation is not helped by many ‘big hitter’ cancer organisations, who mostly tend to list cancers by anatomical SITE, nearly always in alphabetical order. Many of them then add Neuroendocrine Tumors of the Pancreas, Lung, Appendix, to the description for Pancreatic, Lung and Appendiceal Cancer sections respectively, i.e. inferring that they are subtypes of those cancers. I get the reason for the anatomical listing but system wide cancers also need be included, i.e. Neuroendocrine disease should be listed as an entity under N. Which bit of “Neuroendocrine tumors can occur anywhere in the body” is not understood! It is a cancer in its own right, with its own medical coding, its own classification system, its own specialists and specialist centres. It’s not a type of another cancer! That said, you can often find the misnomer term ‘Carcinoid’ listed under ‘C‘ and that is part of the image and awareness problem that results when the correct nomenclature is not used, or, as is the case with many organisations, their sites are not kept up to date.
I once wrote a blog using a title inspired by a patient comment – “The little suckers get everywhere”. This was an early attempt by me to define all the locations I had gathered in from patient comments on my Facebook site. Did I miss any? Please let me know!
Another interesting feature of certain types of Neuroendocrine Cancer is multiple primaries. It’s not uncommon to have multiple primary tumours but they do tend to be in the same organ or site. However, certain uncommon types of Neuroendocrine Cancer such as Pheochromoctyomas/Paragangliomas (including hereditary versions) there can multiple primaries at different sites. Multiple Endocrine Neoplasia (MEN) are a group of disorders (hereditary syndromes) that affect the endocrine system. The disease typically involves Neuroendocrine Tumors in multiple endocrine glands and may cause the glands to become overactive and overproduce hormones.
Clearly we need to ‘raise our sites’and shout louder! My name is Ronny Allan and I have a Neuroendocrine Cancer with a Small Intestinal Primary. I do not have Bowel Cancer!
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I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual ‘spiel’. As sometimes happens, a listener queried me with the words “Neuroendocrine – what’s that?“. Another focused on ‘Neuro‘ enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu – here we go again!
Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again ‘Neuro‘ was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most people look at cancer in anatomical terms. As we know this can often lead to incorrect headlines for famous cancer patients.
I’ve struggled since 2010 to explain this disease in layperson terms. It’s actually one of the reasons for my ‘study’ and my blog. It’s getting easier, particularly when answering questions. However, if Neuroendocrine Cancer knowledge was an iceberg, I’d still be at the tip! I did write a post entitled Horrible Hormones which supports an explanation. You might like to read it– perhaps helpful to aid your overall understanding of this post.
The other difficult aspect of explaining Neuroendocrine Cancer is the extent of the Anatomy and Physiology of the Neuroendocrine system which appears in numerous parts of the body. I’ve written about this before at a time when I was fed up with newspaper reports and on-line articles implying that Neuroendocrine Cancer didn’t exist – e.g. by frequently describing Neuroendocrine Tumours of the Pancreas as Pancreatic Cancer and Neuroendocrine Tumours of the Lung as Lung Cancer. During some of my own verbal discussions, mention of the small intestine was frequently met with “so you have Bowel Cancer“. NO I DON’T! Good time to refresh yourself with my article The Human Anatomy of NET Cancer. This thinking needs to be challenged at every opportunity including while explaining to family and friends.
I’ve therefore decided to attempt a short, generic but still sufficiently detailed explanation of the word ‘Neuroendocrine‘ in relation to my Cancer. I suspect by the end of this article, it will not be as short as I had wished. I do like a challenge 🙂 Here goes:
The neuroendocrine system is made up of a network of cells that are distributed throughout the body. The word neuroendocrine refers to 2 qualities of these cells: they have a similar structure to nerve cells (neurons) and produce hormones like endocrine cells. Neuroendocrine cells release hormones into the bloodstream in response to chemical signals from other cells or messages from the nervous system. Basically hormones travel in the bloodstream and makes things happen in another part of the body.
These neuroendocrine cells are scattered throughout the body performing different roles based on location, e.g.
Neuroendocrine cells in the digestive system regulate intestinal movements and the release of digestive enzymes
Neuroendocrine cells in the respiratory system are believed to play a role in the developmental stages of the respiratory organs. They also regulate respiratory function.
There are many others including some which control or can affect blood pressure, heart rate, blood glucose sugar levels and many other substances.
When Neuroendocrine tumours develop in these cells, they can not only then spread to other locations but they can also secrete excess amounts of hormones and substances which can cause an adverse effect on the body’s natural rhythm. A collection of these symptoms is known as a syndrome. There are several different syndromes depending on the location and type of Neuroendocrine Tumour, and there’s also a hereditary syndrome which is obviously present before tumours.
The presence of the syndrome nearly always indicates the disease has metastasized (spread) and that the tumours are functional. Sometimes tumours are non-functional (i.e. they do not secrete excess hormones) – can be even more difficult to diagnose than their functional counterparts often leading to presentation at very advanced stages.
Most Neuroendocrine Tumours are slow-growing and therefore offer good outlook if identified as early as possible and treated. Even for metastatic patients, the outlook is relatively good with the right treatment and surveillance. However, one of the biggest challenges for Neuroendocrine Tumour patients is the maintenance of a decent quality of life which can sometimes be impacted by the effects of their syndrome and/or the treatment.
I found it very difficult to write a short and generic explanation of the word ‘Neuroendocrine‘ in relation to cancer – no wonder I seem to spend 10 minutes verbally explaining to people and…… no wonder they sometimes look at me with glazed eyes 🙂 However, this is my offer. This is as brief as I can make it to provide understanding. I’ve cut out more than I’ve left behind and feel like I’m short-changing you! However, it needs to be basic and it needs to be short.
Explanations which comprise lists of complex and unpronounceable words each with their own constraints and variable meanings leads to chaos and people switching off. I could have just referred to one of the excellent publications on the web but this isn’t really practical when in an impromptu conversation with wide-eyed listeners. That said, I believe the combination of this post and (if you see light-bulbs) the other 2 linked posts within, is a good way to answer the question if someone is willing to listen (and read a short reference). You may therefore need to follow-up the ‘verbal’ with the ‘written’.
To summarise, I intentionally made this explanation as generic as possible. Trying to explain every single type of Neuroendocrine Cancer will confuse and tire the best listener. If I was using this today, I would add my own additional comment about where my tumours were found and what treatment I’ve had – this I can do without a script! However, if you think this explanation is of use when verbally explaining Neuroendocrine in relation to your cancer, please feel free to share my blog post to aid understanding.
Neuroendocrine – what’s that? I didn’t have a clue …… until I was diagnosed with it!
Opinion. 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. Spookily I even woke up on 10 Nov 2010 after major surgery. Read about this here – I even woke up on November 10th after major surgery.
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 NETs benefits but these things can quickly be forgotten outside the rather small world of NET Cancer patients, specialists, supporters and advocates.
If ‘N’ is equal to the amount of awareness you can physically do, then ‘N + 1’ is the amount of awareness you need. You can never have enough awareness. For me, one day doesn’t cut it. Some cancers have a whole month but they tend to be the big most common ones.
I’m in awe of those advocate organisations who organise these annual events and the patients who gladly join in to help by giving up their time (including NET Cancer Day and all its affiliate organisations). There’s a lot of time and effort required. It’s rather easy for me as I sit in my chair doing my bit – but I am doing it every day. A big advantage I have is that we now live in a connected world and there is an almost unlimited reach to a broad spectrum of people ranging from politicians to the worried well looking for a diagnosis. They all have something in common though …. they’re all connected to the internet and looking for information, looking for a feed. Social media is really powerful but the message needs to be compelling to persuade someone to read my feed again and again. I guess when you are marketing something on a face to face basis, it’s a different ball game but the principles of persuading someone to ‘read your feed’ are the same.
Having analysed 10th November activity and the week leading up to it, I think it was pretty much like last year, i.e. the same old tired old clichés and icons, together with out of date and inaccurate information which patients and patient advocate organisations share between each other. I want new audiences and ones who will stick with NETs instead of just liking a tweet on November 10th. This is what the NET Community needs too. I’m afraid cartoon animals in the most ridiculous scenarios are not going to attract long term support from outside the community. This is not a criticism of any person working for or fund raising for a NET patient organisation, I know they work very hard. This is about the out of date and incoherent strategy.
Although I woke up on November 10th after my surgery in 2010, I only really woke up to NET Cancer Day (the event) in 2014 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. Attracting the notice of politicians is a good awareness tactic as long as the foot remains on gas peddle. In regards interactions with politicians, as another example I’m always happy to see the annual state declarations of support in USA.
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 NETs get 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 one thing I see across the board in these campaigns is the lack of icon adulation you see in NET awareness – rather they focus on firmly on PEOPLE and I believe that is part of their success.
When I suggest to ditch the animal analogies, people say to me “what icon would replace it”. I simply say “why you even need to replace it” as we’re talking about adopting a coherent strategy. By the way, name another successful cancer strategy using an animal as their ‘cover page’. Spoiler alert, there isn’t one.
Because NETs 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, effective and up to date. 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 Human 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 what are essentially memes and which are only liked and shared by patients. It also needs to be accurate.
New audiences means new thinking ….. different thinking. One of my methods is to increase the audience reach by forming relationships with non-NET organisations including physicians. Some of this is extremely hard work. For example, the 2016 WEGO Health Awards took a considerable amount of personal effort and time and ditto for 2017 and 2018. However, there’s a lot of new audiences out there now hearing about NETs that had never heard of the disease until I was able to use the platform of these awards. It’s worth it. Here’s a statement from the CEO of WEGO Health:
My animal free blog site will hit one million views next year and I’m a relative newbie. So perhaps there is another way?
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……..
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 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 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).
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.
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.
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.
Let me add that this is not an attempt to bash Aretha Franklin,Steve Jobs, Nick Robinson, Wilko Johnson,Dag Kittlausor 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:
The jury is still out on Aretha Franklin but hopefully the power of social media will help to dilute the incorrect publishing of her condition as Pancreatic 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.
I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Suttonpassed away. I didn’t really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it’s one of the primary aims of my blog. I’m thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad as that event was) but because the issues he faced are well known to Neuroendocrine Cancer patients, many of whom are readers.
In the past week, the newspapers have published several follow up articles on the Stephen Sutton story providing examples of patients who had been misdiagnosed only to end up finding they have a cancer which is not now curable. Neuroendocrine tumours can present complex challenges to diagnosis and treatment. Even in the case of metastatic spread, there are some important differences in the nature of these tumours compared to other cancers found in the same part of the anatomy (e.g. the pancreas). If you were to search Neuroendocrine tumour support organisations’ forum groups and websites, you will find numerous stories of people of all ages being diagnosed with a whole bunch of ailments before they were finally diagnosed with some form of Neuroendocrine disease.
Some people with Neuroendocrine cancer can be diagnosed by accident during invasive procedures for something more common, e.g. appendicitis – you may remember me saying this was a common site for primary neuroendocrine tumours – these discoveries would be a surprise if the person was asymptomatic (as is often the case). It can also be found during diagnosis of something which the cancer would not otherwise be able to be seen, for example a scan – and even then it may not lead to diagnosis of the correct cancer until further downstream. This scenario might even be the end of a long chain of vague problems (perhaps over years).
When I look at my own experience, I would appear to be somewhere in the middle and the way in which my cancer was eventually diagnosed leads me to think I had a bit of luck but following a period of ignorance on my part. If you remember, I nonchalantly told my asthma nurse I had lost a ‘wee bit of weight’. That could have gone two ways ………… fortunately she sent me for a blood test and here I am now 🙂 If you want to read or hear about my cancer diagnosis experience, check this blog:Diagnosis
However, 18 months prior to that I did go and see my GP saying that I had noticed a darkening of my stool. After a quick ‘rummage’ nothing untoward was reported in the ‘extremities’ but I was sent to see a specialist as a precaution and probably because of my age. I eventually had a colonoscopy and for good luck, an endoscopy. Again nothing untoward reported other than a mild case of diverticular disease which apparently 50% of people over 50 have (filed!). In any case, the stool had returned to normal by this stage. I now know that my primary tumour, even if it was visible, was beyond the range of the colonoscopy procedure and I also now know that my tumours had been slowly growing inside me for some years. However, given the nature of Neuroendocrine tumours, I wonder what might have transpired had I been given a CT scan at that point? But there was no clinical evidence to support such an expensive procedure. After all, I didn’t look ill, I didn’t feel ill.
So what is my bottom line on this story? Cancer diagnosis can be complex, some cancers more complex than others. I often think the whole population should be regularly scanned and have blood tests but that would be cost prohibitive not to mention logistically challenging. I’m sure there are mistakes being made and lessons learned are very important. However, I do believe these cases are in the minority. Putting prevention and research into cures to one side, AWARENESS is key and I mean awareness by the population as well as medical staff. One way to increase awareness is for people to talk about their experiences.
Thanks for reading
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