I once wrote a post about patient stories, in particular the ones I receive in my private messages. The headline was “The shock effect never wears off“. But none have been more shocking than the one I received early in 2019. (edit: After posting this article, I heard of a few similar cases).
This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen. I was so moved by this story, I persuaded this person to let me tell it here whilst retaining their anonymity. Hence referral going forward as ‘Patient E’. I just felt that someone somewhere might learn something very important.
The Story of ‘Patient E’
In December 2018, Patient E was told ‘Stage 4 Pancreatic Cancer’ and had 10 months to live. Chemo was to be attempted in January in an effort to extend life but in the meantime was told to spend Christmas for the last time with the family, a spouse and 3 young children. On 2nd January, Patient E was then told (with apologies) it was actually a ‘Neuroendocrine Tumour with a pancreatic primary’. The only good thing about this story so far, is that they told the children nothing over Christmas. “Why worry happy little people” was the bit of the story which brought out my tears.
Initially I was quite angry this could happen to anyone but I was then calmed by Patient E who now had fresh hope and optimism, perhaps realising that there were possibilities for many more years with the family.
So why do these things happen? Apart from the serious communications lapse by the hospital, this is another example of the problems we as a community face with the anatomical approach many doctors take with cancer, with some even describing a pancreatic Neuroendocrine Tumour as a type of Pancreatic Cancer (this happens with other parts of the anatomy too).
Patient E is not alone, I once wrote a story about rock star Wilko Johnson (of Dr Feelgood fame) who was given a very similar prognosis. However, Wilko was in the later stages of his life and decided instead of undergoing gruelling chemotherapy, he would forego any treatment and tour with his band in the final 12 months of his life and …….. make an album with Roger Daltrey of The Who. It wasn’t until someone enquired why he wasn’t dead after 12 months, that they re-checked and changed the diagnosis to Neuroendocrine Tumour with a pancreatic primary. Read the whole story here.
I wonder how many other times this has happened.
Neuroendocrine Tumours with a pancreatic primary (pNET) is a totally different cancer to Pancreatic Cancer. With Pancreatic Cancer, most people die, quite the opposite with pNETs where most people live. Read more about the main differences here.
I’m grateful to Patient E for contacting me to let me know that my blog and my other support sites have been helpful in the transition from despair to hope since finding out the correct diagnosis on 2nd January. I do hope Patient E will keep me updated.
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.
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.
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
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. 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
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 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 here. You 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!
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.
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!
I recently blogged about a well-known BBC political reporter who has a Neuroendocrine Cancer with a Lung Primary. However, in the usual media ‘double speak’ which can sometimes pervade the coverage of such events, he is said to have Lung Cancer. As I said in that article, sometimes with Neuroendocrine Cancer – the devil is in the detail and you just need to dig to find it. Annoying, we shouldn’t need to dig as he doesn’t have Lung Cancer. I wrote about this anatomical issue here. This is exactly what happened to Steve Jobs and Aretha Franklin.
No sooner had I published the Nick Robinson article, I was alerted to the broadcasting of a film about rock star Wilko Johnson who has the most amazing story to tell. Wilko is a former member of Dr Feelgood, a famous British R&B band who were pretty popular in the 60s/70s/80s and remain so today.
In 2014, Wilko was diagnosed with Pancreatic Cancer and was told he had a year to live. One year later, a photographer friend Charlie Chan (who just happened to be a doctor) commented that he looked too well and was still doing his routine and fast-paced musical performance, that something was perhaps not right about this diagnosis. To cut a long story short, he was retested and re-diagnosed with a Neuroendocrine Cancer with a primary in the pancreas. However, it was a large tumour (7 lbs in weight and the size of a melon) and the surgery was ‘extreme’ taking 11 hours and with a lower than normal chance of survival. He seems to be doing OK so far. However, the ‘double speak’ is also being used in his case as nearly all reports and news articles state he has Pancreatic Cancer.
Until I saw the film on BBC1 a few days ago, I hadn’t realised the film was even being made. The first half of the film is really about a man who thinks he is going to die and he doesn’t really have an issue with this – he misses out all the usual emotions moving straight to acceptance. He also decided to do a ‘final’ gig teaming up with Roger Daltrey (The Who) – you can watch this from a link below.
I suspect the film sponsors were totally surprised to be continuing the film to include his re-diagnosis, his surgery and the beginning of his recuperation (I suspect Wilko was more surprised though). Having now watched the full 90 minutes, I can say I enjoyed it (particularly the second half) but I suspect it won’t be everyone’s ‘cup of tea’. However, it gives an insight into the man himself along with his journey. Some of the music clips will get your feet tapping. A little bit of me wants to get to know him more as I hadn’t realised he is a bit of a philosopher (ex-English teacher) and an astronomer in addition to being a rock star and generally down to earth ‘geezer’. There are some good quotes in the film including “if the cancer is going to kill me, I don’t want it to bore me”. This probably explains his very positive attitude when told he would die and decided his ‘new normal’ would be his usual normal!
There is not a single mention of Neuroendocrine Cancer (unfortunately). However, the film came out on DVD 11 Dec 2015. There might be limitations on playback in non-UK countries but WATCH THE TRAILER click here
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:
There’s also an interesting interview with Roger Daltrey (member of The Who and friend of Wilko). There is more detail of this “other” cancer and his recuperation but again the word Neuroendocrine is not mentioned. Watch Here
Here is the gig with Roger Daltrey, which Wilko thought this would be his last. Watch Here
Having watched the film, I now have more sympathy with Wilko’s position and there’s a bit of me thinking we might hear some more about his condition downstream ………..
23 May 2016 – two new clips to add to the story:
1. Newspaper interview 21 May 2016. Click Here.
2. Interview with Victoria Derbyshire on 23 May 2016. Click Here.
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.
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:
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.