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.
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 the 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.
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:
In the UK, well known actress Olivia Williams was diagosed with a functional Pancreatic NET (VIPoma) She played Bruce Willis’ wife in the blockbuster Sixth Sense in 1999, also known for her roles in TV dramas such as ITV’s The Halcyon and American science fiction thriller series Counterpart. But she’s now an Ambassador for Pancreatic Cancer UK. Read her story here.
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 Kittlaus, Olivia Williams 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. For the record, I support many cancer types on my social media channels but I clearly have a bias towards my own cancer type. Consequently I want to see the correct cancer aligned to the correct person. It follows that I want to see the correct research funding go to the correct cancer type. Thankfully we are now seeing this in the Aretha Franklin story
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.
Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions 10 – A story of the Wall, Swans, Dundee and New Forest History
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Living with Neuroendocrine Cancer during COVID-19 restrictions 11 – a story of Walking the Wall, coping strategies and the London Ga68 PET
Episode 11 of my Living under COVID-19 series. A story of the Walking the Wall, coping strategies and the London Ga68 PET 30th May 2020