Pancreatic Cancer vs Neuroendocrine Tumors of the Pancreas

pancreatic vs neuroendocrine

I campaign hard for Neuroendocrine Cancer awareness including continually pointing out that a Neuroendocrine Cancer with a pancreatic primary is NOT Pancreatic Cancer as is often quoted in the press.  The two main reasons I take up these campaigns are as follows:

1.  They are totally different cancers despite an anatomical relationship.  Although they share some similar presentation, they have different signs, different treatments and vastly different prognostic outcomes.  What that means is that anyone who is looking for useful information on either needs to be very careful on interpretation, they could end up with very bad advice and in some situations, become more concerned than they should be (particularly with the prognostics).  See more below. 

2.  These two different cancer types have different awareness organisations, patient support groups and patient leaders/advocates. In most cases, vastly different awareness messages. Both of these organisations and advocates need all the help they can get, they need all the resources and funding they can get. 

Both Pancreatic Cancer and Neuroendocrine Cancer are diseases that need maximum publicity, both disease types have their own unique situations, thus why the awareness messages can be so vastly different.  It’s really important, therefore, that publicity surrounding famous patients be attributed to the correct cancer type in order that the advocate organisations and supporters can gain maximum benefit to forward their causes.  Unfortunately, thanks to doctors and media, this very often doesn’t work out in favour of Neuroendocrine Cancer due to the Human Anatomy of Neuroendocrine Cancer (this problem actually goes beyond the pancreas).

Where the press and doctors regularly get it wrong

Two famous people in particular, one in 2011 and the other this year, are regularly reported in the press as having died of Pancreatic Cancer.

Steve Jobs.  One of the most famous technical innovators of his time and creator of the most valuable company in the world. He had a Neuroendocrine Cancer with a pancreatic primary.  Read his story here.

steve-jobs-55-to-2011

Aretha Franklin. One of the most famous soul singers of her time.  She had a Neuroendocrine Cancer with a pancreatic primary. Read her story here.

rip-Aretha-Franklin-1

To summarise, Neuroendocrine Cancer is not a “type” of another cancer.

What are the differences? 

For me, one of the two main differences are the cell type. When people talk about Pancreatic Cancer, they really mean something known as “Pancreatic Adenocarcinoma”.  It starts in the exocrine cells, which produce enzymes to support digestion.  Neuroendocrine Tumors start in the endocrine cells which produce hormones.

For me, the other big difference is prognostics.  Unfortunately, it is statistically proven that most people with Pancreatic Adenocarcinoma will die, whereas most people with Neuroendocrine Tumors with a pancreatic primary will live.

For a more detailed comparison, see this excellent article from NET Research Foundation.

iStock-536892277-768x891
diagram courtesy of NET Research Foundation

Pancreatic Cancer – Why I support their campaigns

Personally speaking, as a healthcare advocate online, I do support many cancer awareness campaigns, I think this is important to get similar help coming the other way (this frequently works for me).  However, I very much suspect, other than Neuroendocrine Cancer, my biggest support area online is for Pancreatic Cancer.  I’m drawn by their excellent campaigns where they focus on key messages of prognostics for what is essentially a silent disease (in many ways the same issue with Neuroendocrine Cancer) and they make these more compelling by focusing on people rather than gimmicks. The prognostics can be upsetting reading as they are quite shocking figures which have not changed much in the past 40 years, a key sign that more must be done for this awful disease.   I frequently share this symptom graphic below because it might save a life and I ask that you do too.

pan can symptoms

 

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news. Help me build up my new site here – click here and ‘Like’

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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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Aretha Franklin – another Neuroendocrine Cancer Ambassador we NEVER had

tmz aretha

On 16th AUG 2018, Publicist Gwendolyn Quinn tells The Associated Press through a family statement that Franklin passed at her home in Detroit. The statement said “Franklin’s official cause of death was due to advanced pancreatic cancer of the neuroendocrine type, which was confirmed by Franklin’s oncologist, Dr. Philip Phillips of Karmanos Cancer Institute” in Detroit.

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

pancreatic vs neuroendocrine

Clearly he meant Neuroendocrine Cancer with a pancreatic primary. However, in the fast moving social media world, this is what has gone out with the lazier writers and editors abbreviating it to just Pancreatic Cancer, perhaps because they didn’t see the relevance of the word Neuroendocrine or they didn’t want to confuse the issue.   All of these incorrect posts will now be embedded in the bowels of the internet and used for years to come by those writing about the Queen of Soul.  We in the Neuroendocrine community now have a much harder task because the press releases and her doctor did not articulate the type of disease correctly.  The same thing happened in 2011 with Steve Jobs.  It is considerably frustrating for the Neuroendocrine Cancer community.

However, a celebrity news outlet called TMZ has managed to obtain and publish a copy of her death certificate – you can read their article and see the death certificate by clicking here.  It clearly states “Pancreatic Neuroendocrine Cancer”. This is a contextually significant statement compared to the version of the original cause of death given by her physician and which went viral on the internet inferring that it was Pancreatic Cancer.  Annoyingly, even though they managed to obtain a copy of the certificate, their headline still said Pancreatic Cancer (read the TMZ article here) – please feel free to comment on their site or email the TMZ contact here – eric.page@kcrg.com

I commented as follows: Wrong headline. The certificate clearly states pancreatic “Neuroendocrine Cancer” – a totally different type of cancer, different symptoms, different prognostics, different treatment, different problems. Huge error. Will you be updating it?

They did not update it.

Interestingly the press have been saying Pancreatic Cancer since 2010 despite Aretha keeping her condition private,  However, she came out in 2011 by releasing a statement saying she didn’t understand where ‘Pancreatic Cancer’ came from.


I suspect she knew then it was Neuroendocrine Cancer, obviously from the fact that her doctor told her the surgery would give her another 15-20 years of life – that is certainly not a prognosis you would get with Pancreatic Cancer.

A summary of her cancer experience since 2010 can be found here – not too detailed but useful background.  She had major surgery on December 2nd 2010 (sounds like Whipples?). She wasn’t in good health at diagnosis, with media reports of years of chain smoking, alcoholism, obesity and crash-dieting. She was also diabetic for some year prior to cancer diagnosis.

In one of the better articles from Forbes, they actually stated some words which resonate with the Neuroendocrine Cancer community (see graphic below) – however, the remainder of the article then goes onto to talk about Pancreatic Cancer and not Neuroendocrine Cancer so we lost a massive awareness activity due to the fixation and assumptions with anatomy.

THE HUMAN ANATOMY PROBLEM WITH NEUROENDOCRINE CANCER STRIKES AGAIN.  Read about other errors with celebrities by clicking here

Neuroendocrine Cancer is not a type of another cancer PERIOD

A Neuroendocrine Tumour is NOT

Why do these mistakes happen? 

The Human Anatomy vs cancer type even confuses so called respectable and authoritative cancer organisations. Big hitter organisations such as the American Cancer Society and the US National Cancer Institute fail to list an A to Z list of cancer with Neuroendocrine Tumors / Neoplasms / Cancer / Carcinoma under the letter ‘N’. Instead you can find Gastrointestinal Carcinoid (a term now at least 8 years out of date) and pancreatic and lung NETs under Pancreatic Cancer and Lung Cancer respectively, I’m sure there are other issues.  I have contacted these organisations in the past and hinted there should be a standalone and grouped entry under ‘N’ but this has been totally ignored to date.  While many news outlets have reacted to the rather flimsy and misleading statement coming from the family quoting Aretha’s physician’s words “Pancreatic Cancer of the neuroendocrine type”, medical writers will also take to the internet to research and will find the two ‘big hitter’ websites above and bingo.  To a certain extent I see these issues more in USA than in any other country.

But in the meantime, please note that at least one big cancer organisation looking for changes to the way they display information on NETs as a result of Aretha (read it here) and some credit is due to Chris Nashville Lozina who many of you may know.  However, action speaks louder than words and I will be monitoring their website to see if they actually make the changes they used to jump on the Aretha bandwagon.   It should not be left to patients to do the running here – US NET patient advocate organisations must do more and must do it publicly.

The physician who quoted the cause of death which then went viral on the internet didn’t really do Neuroendocrine Cancer any favours – although we should credit him for leaving the word Neuroendocrine in there. That said, many lazy article writers and media have omitted the word not realising the significance of its meaning, not realising they were then quoting a totally different cancer.  Interestingly her death certificated stated PANCREATIC NEUROENDOCRINE CANCER – that would have been a much better press release.

Some patients are suggesting she has “Carcinoid” but not only is that way off beam, it’s using a term which has been abandoned and is not really good PR for us. In some ways, the ‘C word’ is causing these issues as many physicians make a demarcation line between ‘carcinoid’ and other types of NET associated with one part of the anatomy.

We must stop saying that Neuroendocrine Cancer with a pancreatic primary is a type of Pancreatic Cancer. I think everyone agrees they are different but the KEY POINT is saying or not saying they are a type of Pancreatic Cancer. Saying they are a type of Pancreatic Cancer is not only playing into the hands of Pancreatic Cancer organisations who want to claim the famous icons and their potential fundraising opportunities, but potentially a betrayal of Neuroendocrine Cancer awareness. Only my view though of course.

I will update this article as new information comes out n due course but in the meantime please share using “Neuroendocrine Cancer” as there is much misinformation being spread

RIP Aretha, Queen of Soul R.E.S.P.E.C.T.

ARETHA RESPECT

say a little prayer

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

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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!

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NET Cancer Blog – Top 6 posts of 2017

Top 6 posts

These are my top performing posts for 2017 – comprising one eighth of my entire hits for the year.  My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015.  A chunk of these figures can be attributed to most of these articles.  Please share to maintain the momentum.

Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017
The Human Anatomy of Neuroendocrine Cancer Making the point that Neuroendocrine Cancer is not confined to a particular part of the body 9,906
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis All about syndromes 7,546
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) The very latest information (particularly about grading) 7,027
Neuroendocrine Cancer – no treats, just tricks A very powerful awareness message.  It was only published 2 months ago and is already the 10th most read post in over 220 since this site was set up. 6,083
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had Love him or hate him, he generates external hits on my site – you could say he is now helping with Neuroendocrine Cancer awareness.  It also debunks the Pancreatic Cancer myth 6,046
Ignore this post about Neuroendocrine Cancer Another very powerful awareness message – it is also the most tweeted post about NETs on twitter 4,812

Thanks for reading

You may also enjoy my article “10 Questions to ask your Doctor” – click here.

Most Viewed Posts – click here

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news. Help me build up my new site here – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

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

patients included


PLEASE SHARE THIS POST

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is September 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

NET News

The following news items may be of interest:

 
  • The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep.  This is the first time the drug has ever been approved, despite being in use for  over 10 years.  In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not.  Read more here.
 
  • The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here.
 
  • The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding when used, it reduces the frequency of short-acting somatostatin analogue rescue therapy (….. ergo Octreotide).  Read more here.
 
  • GA-68 PET (NETSPOT) continues to roll out across the USA, see CCFs latest list by clicking here.

 

 
  • The WEGO Health Finalists were announced on 25 Sep and I’m through to the finals in all 3 awards which you nominated me for. Many thanks for the support!  I posted this info here.

Blog Site?  

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

 
 
 
  • The Invisible NET Patient Population.  Centred on the issue of a cohort of as yet undiagnosed people with NETs; or have been labelled with another cancer; or have been told their cancer is benign and therefor not recorded.
 
  • The WEGO Health Finalists were announced on 25 Sep and I’m through to the finals in all 3 awards which you nominated me for. Many thanks for the support!  I posted this info here.

 Other Activity

September was a slower month in ‘new’ blogging terms mainly due to personal activities (holiday) and the consequences of being ‘contactable’ by a large internet footprint! Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time.  I’m currently seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients (more on this later) – my strategy is constantly under review.  However, despite a low month for brand new blogs, I still managed to break through 20,000 views for the 4th month in a row…….. Thank you all so much for the support.

Please join my 2017 awareness campaign event here (select ‘Going’)

I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer.  Please also note that I cannot accept telephone calls on a one to one basis.  Also, the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Awareness Activity in September 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

  • Article features.  I was featured in a well shared and positive article entitled A revolution in the treatment of Neuroendocrine Tumors. A very positive look at the new treatments coming through. I didn’t agree with some of the content but ‘hey ho’ I cannot control what others write.  You can check out the article by clicking here.
  • Twitter.
    • I took part in a patient chat on twitter where I was able to contribute to some general cancer questions.  It was attended by many patient advocates representing many different conditions. The taking part in these activities is time-consuming and hard work but it does allow me to grow as a general patient advocate and to occasionally mention “Neuroendocrine Cancer” spreads awareness to new audiences.  A summary of the conversation can be found here.
    • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  In Sept, I tweeted 109 times on my personal account which lead to almost 75,000 views.  I was mentioned 78 times by other tweeters and gained 68 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.

  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.  Currently 336 subscribers – up 12% on last month.

  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!

  • Macmillan Cancer Support.  I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum.  In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities.  I’ll be reporting more on this in the coming weeks.  This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation.  On August 30th, one of my blogs made their “top picks” generating some NET awareness – check out Living with Cancer – 6 tips for conquering fear They have recently agreed to feature NETs on 10 Nov 17.
that’s me in the centre
  • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.  Cure Magazine has a readership of 1 million.  Click here to read more.

Speaking Engagements

  • On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance)  Things are starting to happen in this area and I already know their NET Specialist Dr Mo Khan who is working hard on behalf of patients.  I’m really looking forward to visiting and talking to this group.

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently.  I’m currently in a pool of patients who may be featured in a UK national, fingers crossed.

Social Media and Stats

Blog Milestone.  In September, I’m very close to 380,000 views! Thank you all so much Keep sharing! On track for 400,000 by end of the October.

Facebook Milestone.  I would love to achieve 6000 followers by the end of 2017 but this will be a challenge.  The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Also check out my sister Facebook sites here (click on ‘Like’)

These are fallback  sites to counter the Facebook algorithm whereby you may not see all my posts on the main site:

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

  • Facebook 5220.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
  • Twitter4153 / 3195 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 379,320
  • Blog with most views: 12761 – The Human Anatomy of Neuroendocrine Cancer 
  • Most blog views in one day:  2043 on 15 January 2017.  Why the spike? ….. The Human Anatomy of Neuroendocrine Cancer” 
  • Most blog views in one week: 7538 in July 2017.
  • Most blog views in one month: 24142 in July 2017.  Why the spike? … these blogs here:
Home page / Archives More stats 2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor More stats 1,253
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 985
I’m still here More stats 869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption More stats 846
Living with Neuroendocrine Cancer – Home Page More stats 824
Ignore this post about Neuroendocrine Cancer More stats 763
The Human Anatomy of Neuroendocrine Cancer More stats 759

WOW!  – that’s an amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and they also keep me humble.  The sharing gives me a bigger platform.  A bigger platform generates more awareness.

 

Thanks for your great support in September.  Onwards and upwards!

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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

community_titled_transparent_2013-10-22

Neuroendocrine Cancer – let’s raise our ‘sites’

lets raise our sites

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!

You may also be interested in the following posts:

The little suckers get everywhere

The Human Anatomy of Neuroendocrine Cancer

Carcinoid vs Neuroendocrine

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

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

patients included

 

 

 

 

 

NETwork with Ronny © – Community Newsletter AUGUST 2017

background scene from my Instagram account – to see more check out the newsletter. Photo credit to Nick Lucas

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is August 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

NET News

The following news items may be of interest:

  • PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval.  Click here.
  • However, in UK, there is a threat that PRRT won’t be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA).  Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK’s drug approver NICE’s negative recommendation.  Read more here.
  • GA-68 PET (NETSPOT) is still rolling out across the USA, see CCFs latest list by clicking here.
  • Ipsen launches the Brazilian version of ‘Living with NETs’ website.  Click here.  (See the English language version – click here).

What’s happening on my Blog Site?  

A quiet month.  Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs.

  • The Invisible NET Patient Population.  My latest published blog and received some great viewing figures (and this continues).  Controversial for some but backed up by facts.
  • NETs – not as rare as you think. An older post with some tweaks.  Again, controversial for some but backed up by facts.
  • Carcinoid vs Neuroendocrine – One of my most controversial posts – this is an older post which previously had an element of sitting on the fence. I jumped off the fence following some further research and period of reflection.  I was happy with some of the positive comments I subsequently received on this post.
  • Steve Jobs.  An updated version with some new research timelines added.  This post continues to receive hits daily even when I’m not sharing.  Most of the hits are from people searching and find my article online, an indication of the interest Steve Jobs still has today.  And many of the hits are NEW audiences.
  • NETwork with Ronny © – Community Newsletter JULY 2017.  My July 2017 newsletter ICYMI.
  • Your favourite posts.  All posts with viewing figures above 2000.

Misc Blog Stuff

  • There’s a lot of chatter about use of the word ‘fight’ in cancer parlance but many people are misrepresenting the word’s multiple meanings as per the most eminent English language dictionaries.  As for me, I’m ‘sticking to my guns’ on the subject.
  • I got some great comments on my monthly Lanreotide ‘butt dart’ post.  Feel free to add questions.  I may know some of the answers and cannot promise answers from Ipsen due to their regulatory arrangements but I will try!  Check out the discussion here …… ‘click here’.
  • My notification about the Ipsen HomeZone (or equivalent services within your own country) got an interesting response.  Since then many others have taken advantage by contacting Ipsen or their specialist asking about the service.  This has also led to feedback about the similar schemes from Novartis for Octreotide.  I’m happy that my post has provided publicity to services which help patients.  Read my post At Home with Lanreotide by clicking here.

Other Activity

August was a slower month in ‘new’ blogging terms mainly due to personal activities and the consequences of having a large internet footprint! Striking a balance is becoming more difficult.  I’m seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients (more on this later).  Also, I’ve been suffering with minor right hip pain but now seeing improvements working with a physiotherapist.  However, despite a low month for brand new blogs, I still managed to make the second highest monthly views ever……..Thank you all so much for the support.

Please join my 2017 awareness campaign event here (select ‘Going’)

I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer.  Please also note that I cannot accept telephone calls on a one to one basis.  However …..the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

By the time you read this update, the nominations and endorsements for the 2017 WEGO Health Awards will be closed.  If you remember last year, I made it to the final in two categories of Blog and Community, and then won the latter.  I should find out if I made the finals by the middle of September. Fingers crossed!  Many thanks to those who took the time and trouble to vote for me.

 

Awareness Activity in August 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

  • Article features.  I was featured in a well shared and positive article entitled A revolution in the treatment of Neuroendocrine Tumors. A very positive look at the new treatments coming through. I didn’t agree with some of the content but ‘hey ho’ I cannot control what others write.  You can check out the article by clicking here.
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  In Aug, I tweeted 130 times on my personal account which lead to almost 90,000 views.  I was mentioned 94 times by other tweeters and gained 64 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.  Currently 294 subscribers – up 10% on last month.  Will you be number 300?
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences.
  • Macmillan Cancer Support.  I’m proud to be a ‘Community Champion’ on the Macmillan Cancer Support Forum helping ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients.  I’ll be reporting more on this in the coming weeks.  This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation.  On August 30th, one of my blogs made their “top picks” generating some NET awareness – check out Living with Cancer – 6 tips for conquering fear
  • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.  Cure Magazine has a readership of 1 million.  Click here to read more.

Speaking Engagements

  • On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance)  Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients.  I’m really looking forward to visiting and talking to this group.

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently

Remember …….

Social Media and Stats

Blog Milestone.  In August, I tipped a 360,000 views! Thank you all so much Keep sharing! On track for 400000 by end of the October.

Facebook Milestone.  I would love to achieve 6000 followers by the end of 2017 but this will be a challenge.  The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Also check out my sister Facebook sites here (click on ‘Like’).

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

  • Facebook 5143.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
  • Twitter4091 / 3160 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 360875
  • Blog with most views: 12568The Human Anatomy of Neuroendocrine Cancer 
  • Most blog views in one day:  2043 on 15 January 2017.  Why the spike? ….. The Human Anatomy of Neuroendocrine Cancer” 
  • Most blog views in one week: 7538 in July 2017.
  • Most blog views in one month: 24142 in July 2017.  Why the spike? … these blogs here:
Home page / Archives More stats 2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor More stats 1,253
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 985
I’m still here More stats 869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption More stats 846
Living with Neuroendocrine Cancer – Home Page More stats 824
Ignore this post about Neuroendocrine Cancer More stats 763
The Human Anatomy of Neuroendocrine Cancer More stats 759

WOW!  – that’s an amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and they also keep me humble.  The sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in August.  Onwards and upwards!

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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

community_titled_transparent_2013-10-22

NETwork with Ronny © – Community Newsletter JULY 2017

 

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is July 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).  July 26th was the ‘Cancerversary‘ of my diagnosis – I’m still here after 7 years and I’m apparently a veritable newbie!  There’s some great comments on my ‘I’m Still Here’ post – check them out … ‘click here’

NET News

The following news items may be of interest:

  • Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here.
  • PRRT takes a step forward to being approved in USA.  Click here.
  • Ipsen launches the German version of ‘Living with NETs’ website.  Click here.

What’s happening on my Blog Site?  

As per above, a quiet month.  Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs.

There’s a lot of chatter about use of the word ‘fight’ in cancer parlance but most people are misrepresenting the word’s multiple meanings as per the most eminent English language dictionaries.  As for me, I’m ‘sticking to my guns’ on the subject.

I got some great comments on my monthly Lanreotide ‘butt dart’ post.  Feel free to add questions.  I may know some of the answers and cannot promise answers from Ipsen due to their regulatory arrangements but I will try!  Check out the discussion here …… ‘click here’

NET Cancer Blog Activity

July was a slower month in ‘new’ blogging terms mainly due to holiday.  I’m seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients.  Also, I’m still suffering with minor pain which has decided to move to my right hip (hopefully localising where the real problem is).  Physiotherapist appointment is next week.  However, despite a low month for brand new blogs, I managed to totally smash my monthly blog view record (after smashing it last month too!)  ……..Thank you all so much for the support.

I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer.  Please also note that I cannot accept telephone calls on a one to one basis.  The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

I’ve been nominated for the 2017 WEGO Health Awards in three categories so far, Blog, Patient Leader Hero and Lifetime Achievement.  If you remember last year, I made it to the final in two categories of Blog and Community and won the latter.  A vote for me is a vote for Neuroendocrine Cancer awareness. VOTE HERE PLEASE

Click on ‘Endorse Ronny Allan’.  It defaults to ‘Blog’ but the other two are there via the drop down menu.  Thanks, I cannot get to the finals without the votes.

Awareness Activity in July 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving.  Currently 269 subscribers – up 12% on last month.
  • I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  Other irons are in the fire but unable to bring you firm news just yet.
  • I’m proud to be a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.  This is the biggest cancer support organisation in the UK.
  • I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.  Click here to read more.

Speaking Engagements

  • On 12 July, I delivered a ‘patient view’ presentation to Ipsen (UK) which was well received.
  • On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance)  Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients.  I’m really looking forward to visiting and talking to this group.
Me with some very nice Ipsen people! 12 July 2017 in London

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently

Remember …….

Social Media and Stats

Blog Milestone.  In July, I tipped a THIRD OF A MILLION views! Thank you all so much Keep sharing! On track for 400000 by end of the year.

Facebook Milestone.  I met my target of 5000 followers a few months before my self inposed deadline date.  I’m very grateful!  The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Medicine

Figures

  • Facebook 5007.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach). Please also join my 2017 awareness campaign event here (select ‘Going’)
  • Twitter4000 / 3095 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 337313
  • Blog with most views: 12323The Human Anatomy of Neuroendocrine Cancer 
  • Most blog views in one day:  2043 on 15 January 2017.  Why the spike? ….. The Human Anatomy of Neuroendocrine Cancer” 
  • Most blog views in one week: 7538 in July 2017.
  • Most blog views in one month: 20498 in July 2017.  Why the spike? … these blogs here:
Home page / Archives More stats 2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor More stats 1,253
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 985
I’m still here More stats 869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption More stats 846
Living with Neuroendocrine Cancer – Home Page More stats 824
Ignore this post about Neuroendocrine Cancer More stats 763
The Human Anatomy of Neuroendocrine Cancer More stats 759

 

WOW!  – that’s an amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and the sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in July.  Onwards and upwards!

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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

community_titled_transparent_2013-10-22

Neuroendocrine Cancer: To cut or not to cut?

surgery
OPINION – nothing in here should be taken as advice from the author. 

On paper, surgery remains the only potentially ‘curative‘ option for Neuroendocrine Tumours (NETs) but there are stage, grade and anatomical constraints to that opinion. Many people get ‘twitchy’ about the ‘C word’ but our most eminent NET specialists use the term frequently including in the major treatment guidelines.

I use the word ‘curative’ with some reservations because for many who are diagnosed at an advanced stage, surgery will not cure but will debulk or cytoreduce as much tumour as possible in order to palliate symptoms and improve quality of life.  This is a big deal because NETs is one of a small number of cancers where debulking surgery can often provide a survival advantage for metastatic cases.  One of the reasons it’s a big deal is because with more aggressive cancers at an advanced stage, surgery just might not be offered. It follows that surgery is most likely adding to the fairly decent NETs survival statistics, including for those with metastatic disease at diagnosis.  More on this below.

That’s a fairly simplistic explanation on behalf of surgery. However, as we all know, nothing in Neuroendocrine Cancer is simple.  There are always a number of factors involved and every decision can in some way be on an individual basis.  There are guidelines for treatment of most types of NETs but ……. they are just that – guidelines.  NET Centres and NET Specialists are encouraged to use these guidelines, for example, a European Centre of Excellence has ENETS Guidelines.  There is a North American equivalent set published by NANETS and NCCN have a decent complementary set.  The UK and Ireland guys (UKINETS) also published a set although many UK centres are ENETS accredited.

Whether to cut or not to cut (or watch and wait then cut if necessary) and the sequencing of treatments is a really difficult issue for NET specialists.  I quite liked watching these two video clips and they cover this issue quite nicely including some interesting abdominal challenges in surgery from known NET Specialists – these short video sessions are highly recommended:

a.  Risk Stratification and Management of NETs – click here

b.  Surgical Considerations for NETs – click here

Surgery can sometimes be a tough call (……to cut or not to cut?)

It is an area where I have some sympathy for physicians and surgeons who sometimes have tough decisions to make. Surgery is risky, particularly where people are presenting in a weak condition, perhaps with very advanced disease, secondary illness and comorbidities.  I also suspect age is a factor (I was surprised to find myself considered ‘young’ at 55).  Physicians and surgeons need to weigh up these risks and the  consequences of the surgery against a ‘watch and wait’ or alternative non-surgical approach.  This would normally be discussed via a ‘Tumor Board’ or Multi-Disciplinary Team (MDT) meeting. However, and although imaging helps, the situation is not really 100% clear until the surgeon ‘gets inside’.  Remember, all physicians and surgeons are bound by the ‘Hippocratic oath’ of “Do no harm“.  Sometimes with NETs, it’s a tough call not only before they go inside but whilst they’re inside.

Surgery should be a carefully considered treatment (…..think before cutting?)

I read many stories from many different parts of the world and I also hear them from people who contact me privately on a daily basis.  Some of them are perplexed why they are not receiving surgery and some are not entirely happy with the surgery they received. Many are perplexed by different advice from different doctors.  I find it very difficult to respond to many. My most frequent answer is “ask your doctor” but I’m normally pretty helpful with the sorts of questions to ask.

One thing which tends to surprise people is speed – or lack of it!  With lower grade NETs, the extent of the tumour (stage), its metastases, histological grade and secretory profile should be determined as far as possible before planning treatment. I like to remind people that in 2010, it took from 26 July to 9 Nov before my body saw a scalpel. With Grade 1/2 well differentiated NETs, you can often get away with that gap.  Sometimes when you are diagnosed with NET, it’s a case of ‘hurry up and wait’.

Back to the guidelines, of course most people will probably fit reasonably well into the relevant guidelines flow chart.  A very generic example here (not for active use please, your area may have an alternative based on availability of treatments etc):

algorithm-ukinets-page-2-gutjnl-2012-january-61-1-6-f2-large
Very generic treatment algorithm UKINETS – Ramage JK, Ahmed A, Ardill J, et al. Guidelines for the management of gastroenteropancreatic neuroendocrine tumours (NETs) Gut 2012;61:6-32.  For example purposes only please.

Timing of Surgery (……to cut now, to cut later?)

Following on from the scenario above, timing of surgery can be another factor in a ‘watch and wait’ situation. I guess this might be something in the back of the minds of more cautious doctors when faced with a rather indolent and very slow growing Neuroendocrine Tumour. For some this can be a sensible thing – ‘kicking butt’ in a surgical context is sometimes the wrong approach. The worry is that if they are not a NET specialist, they may not fully understand the vagaries of neuroendocrine tumor behaviour (i.e. they all have malignant potential – WHO 2010/2017). We’ve all heard the stories of people being told it’s not cancer, right? Please note my article Benign vs Malignant.  However, you may be interested in this post from someone who is one of the most experienced NET surgeons on the planet.  Dr Eric Liu talks quite candidly about the ‘timing’ of surgery suggesting a ‘watch and wait’ approach in certain scenarios.

Of course cutting now might actually be a pre-emptive measure. For example, if physicians can see a growth which is critically placed close to an important structure such as a blood vessel or the bile duct or bowel. Even if the disease cannot be cured, removing the tumour may prevent problems in the future by removing disease from key areas before the vital structure has been damaged or blocked. For example, my surgeon conducted a high risk operation on some desmoplasia (serotonin fibrosis) which had encircled my aorta and cava almost occluding the latter. There’s an excellent surgery pamphlet from NET Patient Foundation and I strongly recommend a read as it’s an experienced surgeon’s approach to surgery with NETs (actually written by my own surgeon Mr Neil Pearce!).  Click here to read it.

One NET centre in USA has published very detailed surgical statistics indicating that surgical cytoreduction in NET patients has low morbidity and mortality rates and results in prolonged survival.  Their conclusion went on to say “We believe that surgical cytoreduction should play a major role in the care of patients with NETs”.  You can read the extract from this document by clicking here.  Authors: Woltering et al.

Was Steve Jobs a smart guy who made a stupid decision when it came to his health? It might seem so, from the broad outlines of what he did in 2003 when a CT scan and other tests found a cancerous tumour in his pancreas. Doctors urged him to have an operation to remove the tumour, but Mr. Jobs put it off and instead tried a vegan diet, juices, herbs, acupuncture and other alternative remedies. Nine months later, the Neuroendocrine Tumour had grown. Only then did he agree to surgery, during which his doctors found the cancer had spread to his liver. The rest is summarised in my article Steve Jobs.

Summary

This is a difficult subject and no one size fits all. Treatment for NETs can be very individual including surgery.  I guess you need to be comfortable with your team. I was lucky, in that I lived close to a NET Centre.  I was referred to their surgical team once my staging and grading were complete and I was stabilised on somatostatin analogues (carcinoid syndrome under control).  I realise it’s difficult for many but I always say to people who make contact, it’s best if you can be seen by a NET centre or an experienced NET specialist – at least be guided by one if not possible or practical.  Personally, I think the surgeon’s experience in dealing with NETs is really important.  But even experienced NET centres/specialists have to make tough calls.

You may benefit from my 10 Questions article which also has links to NET Specialists.

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!

 

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

steve jobs 2010
The last few years have reminded me that life is fragile

Steve Jobs died 5 Oct 2011.  RIP Steve, you certainly made a difference to the world of technology and that is still being felt today.  I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That’s interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported.

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

pancreatic vs neuroendocrine

I’ve mentioned Steve Jobs a few times previously, mainly in my blog The Human Anatomy of Neuroendocrine Cancer. I wrote that blog when I was frustrated about the constant misreporting of Neuroendocrine Cancer as other types of cancer. Others included Nick Robinson (see blog The Devil is in the Detail) and Wilko Johnson (The Ecstasy of Wilko Johnson).  I’ve also suggested in my blog ‘Every Day is NET Cancer Day’ that we need high-profile patient Ambassadors and despite his death, Steve Jobs would have been quite a catch, had he been willing. Curiously, the same thing is happening with Dag Kittlaus (Siri creator) who was diagnosed with a pNET last year.  To add insult to injury, the 2018 death of Aretha Franklin is gong the same way.

A lot has been written about Steve’s cancer experience and much of it is full of ‘what ifs’. However, I’d like to focus on the facts that are known and we can be almost certain about. That said, the precise detail that we (as NET patients) might want, is probably only to be found in Steve Jobs’s medical documents. Many people say that Steve Jobs had a right to personal privacy and I agree, nothing I put here isn’t already in the public domain.

Diagnosis

How was it found?  In 2003, Steve was having a CT scan to examine his kidneys and ureter, as he had developed recurrent kidney stones beginning in the late 1990s. A suspicious lesion was spotted on his pancreas. To cut a long story short, he eventually had more specialist scans and then a biopsy which diagnosed a type of Neuroendocrine Tumour.  There are many mentions of Insulinoma, a pNET which is reported to have a 10% malignancy rate (ISI Book – Woltering et al). It isn’t clear whether Steve had any presentational symptoms of an Insulinoma at this point (i.e. hypoglycemia).  There is also some chatter online about his tumour being a Glucagonoma (another type of pNET).

Initial Treatment

Steve initially tried alternative medicine before having surgery 9 months after diagnosis. There are reports of his medical team urging surgery earlier and his biographer stated that Steve had later regretted this delay. One of his Doctors is reported to have said “Steve was a very thoughtful person. In deciding whether or not to have major surgery, and when, he spent a few months consulting with a number of physicians and scientists worldwide as well as his team of superb physicians. It was his decision to do this”.  He is reported to have gone on to have a ‘Whipple’ type operation in 2004.  It was only then, that his condition was made public.  During that operation, 3 lesions were reported on his liver.

Ongoing Treatment and Surveillance

Most NET patients enter this phase after their initial treatment, it’s also the period where you learn about the cancer and how best to live with it.  There’s not much written about Jobs’ illness between his surgery and his liver transplant but my research uncovered a useful timeline from Bloomberg and other sources:

June 12, 2005: Jobs talks about his fight with cancer during a commencement speech at Stanford University. He says he was diagnosed about a year earlier and that doctors told him he wouldn’t live longer than six months. The cancer turned out to be a form that was treatable with surgery, “and I’m fine now,” he says. Source Bloomberg.  {Author’s note:  an indication he had been told, or his doctors knew, it was a Neuroendocrine Tumor}

January 24, 2006:  Walt Disney chief executive Bob Iger knew early on that Steve Jobs’s cancer had returned and kept it a secret before it became public knowledge, a new biography of Apple’s late chief executive reveals. The day the deal was officially announced, Mr Iger said he was at Pixar’s headquarters for the ceremony when Jobs asked to go for a private walk. On a secluded part of the Californian campus Jobs put his arm around Mr Iger’s shoulder and revealed his cancer was back. “Frankly, they tell me I’ve got a 50-50 chance of living five years,” the Disney CEO quoted Jobs as saying.

2007:  Not much out there except that he was busy launching what might be regarded as Apple’s most successful and iconic product ever – the iPhone.

June 9, 2008: Jobs, while introducing the iPhone 3G at Apple’s developers’ conference, appears thinner and frail. The company blames a “common bug.”

July 21, 2008: Responding to concerns about Jobs’s appearance, Apple says he has no plans to leave the company and that his health is a private matter. Investors aren’t reassured, and the shares fall 10 percent.

July 23, 2008: The New York Times reports that Jobs has been telling associates and Apple’s board he is cancer-free. Jobs had a surgical procedure earlier in the year to address a problem that contributed to his weight loss, the newspaper reports, citing unnamed people close to the executive. The shares climb 2.6 percent.

July 26, 2008: New York Times columnist Joe Nocera writes that he spoke two days earlier on the phone with Jobs, who said his health problems weren’t life-threatening. Jobs declines to go on the record about the nature of his ailment.

Sept. 9, 2008: Jobs, introducing new iPod media players at an event in San Francisco, still looks thin. “Reports of my death are greatly exaggerated,” Jobs jokes. Munster says that while the CEO’s appearance is unchanged since June, “Just the fact that Steve Jobs was up there was a positive.”

Oct. 3, 2008: A posting on CNN’s citizen journalist Web site, called iReport.com, says Jobs has been rushed to the hospital after a “major heart attack.” The shares fall 5.4pc. The stock rebounds after Apple says the report is false.

Dec. 16, 2008: Apple says that Jobs won’t be giving his usual speech at the Macworld conference, renewing concerns about his health. Jobs had used the forum to introduce new products for 11 straight years.

Jan. 5, 2009: Jobs says he is suffering from a hormone imbalance, causing him to lose weight. Jobs vows to remain CEO during treatment. “The remedy for this nutritional problem is relatively simple and straightforward,” Jobs says in an open letter.

Jan. 14, 2009: Jobs gives up day-to-day operations to Cook until June, saying his health problems are more complex than originally thought. Jobs says he will remain involved in major strategic decisions. “I look forward to seeing all of you this summer,” he says in a letter to employees.

By this stage, his cancer is already starting to take its toll on how he looks.

The disease takes its toll over the years

Liver Transplant 2009

It is common knowledge that Jobs had a liver transplant in 2009 in Tennessee (he was on the list in California and Tennessee).  In between his Whipple and then, he appears to have lived (and worked) with his disease and it’s consequences. His issues appear to have been exacerbated by his excessive vegan diet/fads and the effects of the Whipple surgery (many of you will be aware of these effects). For example, he would spend weeks eating the same thing and then suddenly change his mind and stop eating it. He’d also go on fasts. His condition immediately prior to the liver transplant was said to be ‘poor’ and losing more weight (he had been noticeably thinner for some time).

Did Steve Jobs get ‘experimental’ PRRT?

Jobs took a second medical absence for roughly six months in 2009. It wasn’t until June 20th, two months after the fact, that the Wall Street Journal uncovered the fact that Jobs had undergone a secret liver transplant at Methodist University Hospital in Memphis, Tennessee. However, during that absence, Fortune reported Jobs also took an unpublicized flight to Switzerland to undergo an ‘unusual radiological treatment’ (PRRT) at the University of Basel for neuroendocrine cancer, according to Jerry York, the Apple director who died in March 2010.

Post-Liver Transplant

In 2010, Jobs started to feel sick again. He would lose his appetite and begin to feel pains throughout his body. His doctors would do tests, detect nothing, and reassure him that he still seemed clear.  In early November 2010, he was in pain, stopped eating and had to be fed intravenously by a nurse who came to his house. The doctors found no sign of more tumours, and they assumed that this was just another of his periodic cycles of fighting infections and digestive maladies.

Heres’ a great bunch of TV interviews (something Jobs didn’t do very often).  “The last few years have reminded me that life is fragile”.  Click here (worth watching the whole 10 minutes). His final TV appearance was in June 2011 to the Cupertino City Council about the acquisition of land for their new campus.  Worth watching some of it: Click here.

The End

In early 2011, doctors detected the recurrence that was causing these symptoms. Ultimately, he developed liver, bone, and other metastases.  He had a further extended leave of absence from his job before stepping down as Apple CEO in Aug,  Steve Jobs eventually died 5 Oct 2011.

steve jobs 2010
The last few years have reminded me that life is fragile

References

Notwithstanding the Pancreatic Cancer vs Neuroendocrine Cancer issue, I carried out my research mainly using two articles of the many you can find out there:

  1.  “And one more thing” about Steve Jobs’ battle with cancer
    This is a long article and totally fascinating.  Some of the evidence is presented using extracts from Walter Isaacson’s book ‘Steve Jobs’
  2. A Tumor Is No Clearer in Hindsight.  This article comes to similar conclusions than the one above but it’s shorter and easier to read. It’s from the New York times and was written after the dust settled on Jobs’ death (i.e. when more facts were available). There is also input to this article from NET specialists Dr Wolin and Dr Libutti.

  3. Apple chief Steve Jobs: Health timeline since 2003.  This article is from a UK National Newspaper (The Telegraph) but via US Business Publication Bloomberg.

Personal Summary

“A tumor is no clearer in hindsight” is a good summary on the basis that I would have liked much more detail!  During my research, I found many mentions of Insulin as stated above but only one or two mentioning Glucagon, a hormone associated with another pNET type – Glucagonoma. However, looking at this tumor type in the ISI Book (Woltering et al) and the Jobs diagnostic and treatment story, I have some doubts whether this was the precise tumor type. I have some other searches in progress hoping to find something concrete.

Thinking Differently There is no doubt that Steve Jobs was an amazing and very interesting character.  You just can’t see Apple being the Apple it is today without his intervention.  He was famous for being ‘unconventional’ and ‘thinking different’ and I get that element of his character.  I just can’t help thinking that perhaps he should have been more ‘conventional’ with this thinking and approach to treating his cancer. However, we just don’t know what advice he was receiving and what advice he accepted or rejected.  As for the ‘Pancreatic Cancer’ thing – I’ve said this before, I believe patients only say or interpret what their doctors say to them in regards cancer type.

“The most famous patient ambassador we never had”.  I don’t mean any disrespect by that, I’m just emphasising that we need so much more awareness of our cancer and a high-profile patient could do so much to help in this area. If he was so inclined, Steve would have been a fantastic advocate for Neuroendocrine Cancer and there’s an area where perhaps thinking different might be the way ahead. However, I have a suspicion that very famous people don’t really want to talk about their illness and Steve Jobs might even perceive that as a weakness.

And one more thing …….  you may also find this article useful.  It’s titled “And one more thing”

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

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

 

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

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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   

 

I bet my flush beats yours?

royal_flush_w
There are different types of flush!

Neuroendocrine Cancers can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some.  Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities which have similar symptoms.  Textbook diagnostics just don’t make sense, sometimes even when the doctor suspects Neuroendocrine Cancer i.e. classic symptoms of ‘something’ but with negative markers for NETs. Clearly those are extreme cases and just like other complex diseases, many diagnoses of Neuroendocrine Cancer can be extremely challenging.  Even for an experienced doctor, it can be a difficult jigsaw!

Most types of Neuroendocrine Cancer can be accompanied by a ‘syndrome’ i.e. the tumours are ‘functional’ and this is normally (but not always) associated with metastatic disease. At this point it’s also worthwhile saying that some Neuroendocrine Cancers can be ‘silent’ (non-functional) for years before any symptoms show and it’s normally only when they metastasize, that these clinical syndromes come to life. Ironically, the manifestation of the disease with a syndrome can occasionally turn out to be a life saver albeit the cancer is normally incurable at this stage – but still treatable.

The most common type of Neuroendocrine Cancer can often present as a collection of symptoms known as Carcinoid Syndrome and the most common of these is flushing with approximately 84% frequency.  Others symptoms include (but are not limited to) diarrhoea, heart palpitations, stomach cramps and general abdominal pain/discomfort, shortness of breath, wheezing.  You can see the scope for confusion and misdiagnosis.  You may find my blog on the ‘5 E’s of Carcinoid Syndrome’ useful.

When you look at these general Carcinoid Syndrome symptoms, flushing seems to be the one that stands out as a ‘cardinal sign’ whereas many others are vague and easily confused with common/regular illnesses.  However, the flushing is reported to be different from most people’s perceptions of a ‘flush’.  The Carcinoid flush is almost always ‘dry’.  To quote my ‘amazing yellow book‘ (co-authored by Woltering, Vinik, O’Dorisio et al), “…. a good rule of thumb is if the flushing is wet (accompanied by sweating), it is due to a cause other than Carcinoid”.   Dr James Yao, another well known NETs guru also raises this distinction by stating…. “The facial flushing of carcinoid syndrome is usually a dry flushing, and not associated with sweating like other kinds of flushing. The flushing is often a symptom that others notice before patients do. They may not feel it themselves.”

Additionally, from the same source, there appears to be at least two varieties of flushing in Carcinoid Syndrome related to two different anatomical regions of the primary tumour (again a useful guide from my amazing yellow book):

What to Look For in Flushing – Distinguishing Signs and Symptoms

There are two varieties of flushing in carcinoid syndrome:
1. Midgut: The flush usually is faint pink to red in color and involves the face and upper trunk as far as the nipple line. The flush is initially provoked by alcohol and food containing tyramine (e.g., blue cheese, chocolate, aged or cured sausage, red wine). With time, the flush may occur spontaneously and without provocation. It usually lasts only a few minutes and may occur many times per day. It generally does not leave permanent discoloration.

2. Foregut tumors: The flush often is more intense, of longer duration, and purplish in hue. It is frequently followed by telangiectasia and involves not only the upper trunk but may also affect the limbs. The limbs may become acrocyanotic, and the appearance of the nose resembles that of rhinophyma. The skin of the face often thickens, and assumes leonine facies resembling that seen in leprosy and acromegaly.

Another source for flush descriptions comes from a paid article written by well known NET Endocrinologist – Kjell Öberg.

Four different types of flushing have been described in the literature.
Endocrinology: Adult and Pediatric – 7th Edition 2016.

The first type is the diffuse, erythematous flush, usually affecting the face, neck, and upper chest (i.e., normal flushing area). This flush is commonly of short duration, lasting from 1 to 5 minutes, and is related to early stages of malignant midgut NETs.

The second type is violaceous flush, which affects the same areas of the body and has roughly the same time course or sometimes lasts a little longer. These patients also may have facial telangiectasia. This flush is related to the later stages of malignant midgut NETs and is normally not felt by the patients because they have become accustomed to the flushing reaction.

The third type is prolonged flushing, lasting for hours up to several days. It sometimes involves the whole body and is associated with profuse lacrimation, swelling of the salivary glands, hypotension, and facial edema. These symptoms are usually associated with malignant bronchial carcinoids.

Finally, the fourth type of flushing reaction is bright red, patchy flushing, which is seen in patients with chronic atrophic gastritis and ECLomas (derived from enterochromaffin-like cells) of the gastric mucosa with evidence of increased histamine production.

Differential diagnoses for flushing?

The facial flushing associated with NETs should be distinguished from other causes of flushes. The carcinoid syndrome flush is provoked by spicy food, alcohol, and physical and psychological stress, and it is often worse in the morning. Patients with idiopathic flushes usually have a long history of flushing, starting rather early in life and sometimes with a family history without occurrence of a tumor. Menopausal flushes usually involve the whole body and might be related to release of calcitonin gene–related peptide (CGRP) with transient vasodilation, a so-called dry flush. Another type of menopausal symptom is the wet flush, which includes epinephrine-induced sweating. Proposed mediators of flushing in menopause are CGRP, histamine, prostaglandins, serotonin, lysyl-bradykinin, and substance P. Estrogen is known to have an impact on the production and release of different signaling substances such as noradrenaline and β-endorphin. Low estrogen levels cause lower β-endorphin activity, which in turn enhances the release of gonadotropin-releasing hormone (GnRH), which gives rise to high luteinizing hormone (LH)levels. Postmenopausal women in whom a true carcinoid syndrome is developing can tell the difference between the two types of flushes. Sometimes patients with medullary thyroid carcinoma have brief flushes provoked by alcohol. In patients with watery diarrhea, hypokalemia, achlorhydria syndrome (WDHA; vasoactive intestinal peptide [VIP]omas), a purple-red constant flushing of the whole body may develop. This flushing reaction is related to the vasodilator effects of VIP. Flushes seen in mastocytosis are related to release of histamine from mast cell granules. Mastocytosis is a rare disease of mast cell proliferation that occurs both cutaneously and systemically.

So it’s clear from our experts that the flushing symptom has many potential triggers and can be attributed to the secretion of excess hormones associated with Neuroendocrine Tumours. It’s also clear that the symptom is not just associated with carcinoid syndrome. Although many people focus on serotonin as the main culprit, there appears to be significant evidence to suggest that other hormones may be playing a bigger part with this symptom, e.g. histamine (particularly foregut), tachykinins (Substance P), bradykinins, and prostaglandins.

If you study the online forums, there are frequent questions about flushing, particularly from those looking for a diagnosis and are suspecting Carcinoid Syndrome due to a flushing symptom. However…… even flushing cannot always be attributed to a NET, particularly if it’s the only symptom being presented.

Flushing tests

This is a very useful table taken from my amazing yellow book which gives the tests required to determine the potential source of a flushing (differential diagnosis).  I strongly suspect this is not an exact science (…..is anything in medicine?) but it’s extremely useful.  Personally I would have included Rosacea :-).  The referenced article “>Endocrinology: Adult and Pediatric – 7th Edition 2016 by Öberg, Grosssman et al, generally agrees with this list but adds WHDA Syndrome (a pNET called VIPoma), food, drugs, ethanol and idiopathic. It also generalises Neurologic disorders (see more below).

Öberg, Grosssman, et al list the following drugs that can cause flushes:

  • Bromocriptine
  • Tamoxifen
  • Nicotinic Acid
  • Opiates
  • Calcium channel blockers
  • Ketoconazole
  • Chlorpromazine
  • Cephalosporin

Öberg, Grosssman, et al list the following foods that can cause flushes:

  • Spicy food
  • Glutamate
  • Sodium nitrate
  • Sulfites
  • Hot beverages

Öberg, Grosssman, et al also list the following neurologic disorders that can cause flushes:

  • Anxiety
  • Migraine
  • Parkinson’s disease
  • Spinal cord lesions
  • Brain tumors

Clearly these lists are those that can cause a flush but not everyone will experience this.  For example, when I was syndromic with flushing, I never had any issues with hot beverages.

My own experience with flushing brings back some memories and it emphasises something I say a lot – the patient has a big part to play in their own diagnosis.  Please check out this 90 second video about how I did not play my part!  I was experiencing a mild and innocuous flushing sensation for some months before I was diagnosed with metastatic Neuroendocrine Cancer.  Even though I knew it was weird and something I hadn’t experienced before, I totally ignored it.  I failed to mention it at any of my routine GP appointments or my annual asthma clinic.  I failed to mention it to my specialist who was investigating a GP/PCP diagnosis of Iron Deficiency Anemia/weight loss.  After a CT scan, the specialist appeared to be scratching his head …..  at that point he knew I had cancer but he also knew it was unusual.  I suddenly mentioned the flushing and ‘bingo’.  It was the face of a man who had just found a missing piece of a jigsaw and he correctly predicted the output from my subsequent liver biopsy.

For the next few months, I was keeping my condition private at work but it was sometimes difficult to disguise the flushing. At least  one person thought my blood pressure was going up! Fortunately, my flushing disappeared after treatment.

I’ll complete this post with an interesting summary from an online forum post in which I was participating. There was a general discussion about the severity of ‘syndrome symptoms’ including triggers and I was staggered to read that people were experiencing flushing whilst carrying out routine day-to-day tasks. I’m so happy I don’t flush when I eat one square of chocolate (that would be a complete disaster!).  The one which caught my attention was the simple act of washing hair. Whilst I initially raised my eyebrows and laughed, it did make me think back to the last flush I experienced (and touch wood it was the last …..).  Following my diagnosis, I commenced daily injections of Octreotide. These injections reduced the flushing but it didn’t eliminate it. However, after my ‘debulking’ surgery in Nov 2010, my flushing disappeared.  However, I do remember this small flush coming out of nowhere whilst I was recovering in hospital after that surgery. I was cleaning my teeth and I do vividly remember this minor task taking some effort!

I haven’t had a flush since and if this symptom comes back, I’ll know I have a new problem to contend with.

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

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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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The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

 

“But it works… I read it in the news!”
“But it works… I read it in the news!”

You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.

Many well meaning people will send you articles they saw on the ‘NET’ about this and that treatment which claims to cure cancer.  They also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks.  The vast majority of these ‘suggestions’ will be lacking in any proper and formal scientific research and there is normally a product or book for sale attached to the link.  In some instances, these ‘miracle cures’ can actually be dangerous for some.

random treatment on the internet
Graphic courtesy of Emily McDowell Studio

In a follow on article, Cancer Research UK warns of the risks in Alternative Therapies which is written in a similar vein.  I pay great attention to what these guys say.  I know from my association with their research capability, that they take an evidence based approach and do not publish these things lightly.  Please note Alternative Therapy is not the same as Complementary Therapy, it means an alternative to conventional treatment.

One bonus and very interesting aspect of their article is that they discuss the Steve Jobs issue of initially opting for alternative treatment rather than conventional, excellently making the point that he did not have Pancreatic Cancer, rather he had a Neuroendocrine Tumour (NET).  We all know this, but many newspapers, magazines, TV commentators and bloggers frequently get this wrong.

One of the big selling points advocates of alternative therapies use is to claim that conventional treatments are ’toxic’ while their favoured treatment is ‘natural’, implying that natural is somehow better.  In analysis, that is a fallacy.

“But it works… I read it in the news!”

Stories in the news about alternative therapies are usually framed in the words of a patient talking about their own cancer journey. But this is neither scientific proof nor any kind of guarantee that a treatment is effective or safe. People pushing alternative therapies frequently wheel out stories from ‘survivors’ who are apparently alive due to their treatments, yet without providing solid evidence to prove it is true. This raises false hope and unrealistic expectations that there is a hidden miracle cure that can be unlocked for the right price, or by eating exactly the right foods.

Those selling and promoting alternative treatments rarely discuss the risks, especially the biggest risk of all – missing that small window of opportunity to hit a cancer with the best conventional (and proven) treatment possible.

The link to the article is here – I strongly encourage you to have a read – click here.

There’s another article here where a study confirms people who opt for alternative therapy die sooner than those who don’t – read here.

You may also be interested in reading Part 3 of this series where I discuss the FDA clampdown on bogus claims made by those sharing ‘miracle cures’

Be careful out there – it’s dangerous.

You may also like my Neuroendocrine Cancer myths articles – click here

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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Do you suffer from NET Brain?

This isn't me by the way!
This isn’t me by the way!

The acronym ‘NET‘ (NeuroEndocrine Tumour) can be advantageous to NET Cancer advocates and organisations because it occasionally attracts readership from outside the Cancer community when links are accidentally found by ‘surfers’ (intentional use of a word with a double meaning will become apparent …. read on).

You see, NET, just also happens to be a common truncation of the word ‘Internet‘ or ‘Network‘.  The vast majority will realise the irrelevance (to them) and move on but 1 or 2 might just hang around and take a look.  Bingo – we have spread a little bit of awareness!

However, these unintended awareness opportunities are not confined to ‘NET’.  According to my blog statistics, other than my name, the most common search phrase which leads to my blog is “No Fear” – the title of one of two blogs I wrote on so-called ‘scanxiety’.  However, I suspect many surfers, base jumpers, bungee jumpers, climbers, extreme sport types and those looking for this famous clothing brand, have now learned something about Neuroendocrine Cancer 🙂  Interestingly, there’s also been a search using the phrase “humor fat german nurse syringe to butt” which found my blog site. I wonder what that was about?

Conversely, NET (Cancer) advocates and patients may come across the term ‘NET’ thinking this is something associated with Neuroendocrine Tumours only to find it’s something about ‘technology’ – I know some NET patients who would be equally happy in both areas! Had he been alive, Steve Jobs (the most famous of all NET patients) would have been happy with this, most likely declaring his condition as ‘iNET‘. However, the diversion during searches is more likely to be in our direction given the extreme popularity of all things ‘NET’ in the IT world vs. the niche and esoteric subject of Neuroendocrine Tumours (NET).

This diversion happened to me last week when I came across an article in the UK news where the term ‘NET’ was used in conjunction with a part of the anatomy, so it immediately caught my eye.  It was a term I hadn’t heard before so thought it might be some new research worth ‘tweeting’ or for further analysis as a potential blog post. The article was entitled “Do you suffer from NET BRAIN?”. However, upon reading, I found it was news of research by a group of psychologists who claimed ‘tech’ (meaning IT/mobiles/tablets etc) makes one in 10 people into “anti-social and distracted narcissists” and that it was now a recognised medical disorder called NET BRAIN.

I laughed out loud (LOL), in fact, I also LMAO and was ROFL. Perhaps this was a reaction to disguise the feeling that I might already be suffering from this condition although I’m content it has nothing to do with my NET (are you confused yet?). Apparently the main symptoms of NET Brain are ‘poor attention span’ (PAS) and a ‘fear of missing out’ (FOMO) and personally I would also add the use of #dafthashtags and extreme use of three and four letter abbreviations (TLA and FLAS) into the mix.

What can I say … I don’t think I have PAS but I confess to sneakily checking twitter/emails/Facebook posts and my blog stats on a (shall we say) ‘frequent’ basis. I am, however, far too old for FOMO – I quite enjoy my 8 hours sleep a night (part of my new normal) and normally have no issues getting to sleep.  The article went on to say ‘people who are classed as passionate and uninhibited are three times more likely to become addicted to technology than others’. I’m passionate about stuff but I’m not that uninhibited (#tooconservative #annoyinglyanalytical).  IT and ‘social media’ (tech) are essential for my mission to spread awareness of NET Cancer – that rules out any narcissist tendencies. However, it does rule in what might be perceived as an addiction, but in reality I’m just a man on a mission.

One thing I did draw out of the article is that ‘NET Brain’ is definitely more prevalent and has a much higher incidence rate than NETs. However, if you actually suffer from FOMO, then you had better sign up for my blog, my daily twitter newsletter and Facebook immediately. I wouldn’t want you to miss anything 🙂

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

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

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

 

 

 

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.

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 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
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.

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!