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

Disclaimer

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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   

 

It’s scary searching Cancer online

IMG_20160427_192004.jpg-1060x1060
that’s me in the middle

When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It’s not just knowing where to look, it’s also about the interpretation and knowing what is current and what is out of date.  As a novice NET patient, I found out my 5-year survival rate was only 38%.  It looked like a credible site but I now know it was totally out of date!  I’m still here! 

Fast forward 6 years and I now confidently prowl the internet, I know where to look, I know what to ignore, I know what is current and what is out of date.  I understand the disease and am able to put most things into context. Even today with much more positive stuff out there about new treatments and much better prognostic forecasts, I suspect for newly diagnosed patients, it will still be scary.

When I established my blog and then my ‘front end’ supporting Facebook site, I decided to put this experience to good use to help others (including myself!). I like to help people navigate the muddy waters of Neuroendocrine Cancer.  This can bring with it some tough questions so I’m always careful to manage expectations.  Fortunately, I have a number of ‘go to’ sites, people and organisations that I use once I’ve established someone’s requirements.

I’m often reluctant to recommend particular patient forums to anyone as I think many of them can fall into the scary category, particularly those without any form of monitoring or ‘community champions’ who are experienced or trained to handle the issues that can occur online.

Around a year ago, I decided to join the Macmillan Online Community Information site, and was pleased to see it had a blogging app. I found it to be an excellent site and it has a ‘one stop shop’ of supporting tools and information.  It’s very easy to navigate and use.  You can read the content but you need a logon to blog or comment on any discussion (pretty standard).  Their information on many of the issues faced by cancer patients is second to none (Finance, Work, Emotions and many others). I know some NET patients are wary of technical information about NETs online but of all the sites that are designed for supporting multiple cancers, Macmillan is one of the best ones for general NET information. There is also a discussion app (a forum) which I try to monitor and help those who find this site and are struggling to find answers to certain questions. There isn’t really a strong presence in the Neuroendocrine Cancer section but it is a less common cancer. They have a number of ‘Community Champions’ on their forums who are absolutely fantastic and they make you feel comfortable. Moreover, they make you feel like you are not fighting cancer alone.

I’m also a heavy supporter of Macmillan on twitter as some of their campaigns directly benefit Neuroendocrine Cancer. More and more people are now living with Cancer and there has to be more focus on maintenance and support, in particular for the consequences of cancer. Macmillan is at the forefront of these campaigns and they are an organisation that can make a difference.  I have listed some Macmillan twitter accounts to follow below.  If you’re a tweeter, your help with their campaigning would be appreciated. UK patients can also sign up as an e-campaigner – this is an easy task involving half a dozen 10-minute online activities per year – so you too can help make a difference by adding your voice.

In terms of Neuroendocrine Cancer awareness, the Macmillan blog site is now my 6th biggest referral point to my Living with Neuroendocrine Cancer blog and they have also featured several of my posts and used some as guest blogs.  I was therefore both delighted and honoured to have been chosen to feature in their ‘Community Information’ campaign poster which you can see as the header picture in this blog. During the photo shoot, I also got to meet the fantastic staff from Macmillan Cancer Information and Brand Awareness departments.

Finally, please note that Macmillan have advertising space booked and you may see my face as you’re driving through the UK streets or stood at a bus stop. Now that is scary!

Thanks for listening

Ronny Allan – Macmillan Cancer Voice

for those on twitter, please consider following and supporting these twitter accounts:

Macmillan Consequences of Cancer

Macmillan Recovery Package

Macmillan Cancer Information

Macmillan Campaigns

Macmillan Cancer (main account)

 

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

 

For those on twitter – please consider retweeting the post below:

https://twitter.com/MacConsequences/status/736905556582141952?s=09

Living with Neuroendocrine Cancer – it takes guts

it-takes-guts-living-with4.jpg

The majority of Neuroendocrine Tumours (NETs) are slow-growing (well differentiated).  However, many tumours can be silent (non-functioning) for some years before they start to ‘function’ and inform you of their presence.  Even then, it may take some time to work out the real cause as the symptoms can mimic regular ailments.  Moreover, in most cases, the appearance of a functional tumour normally indicates the disease has metastasized and could now be incurable. Some tumours will grow and metastasize without syndromes, i.e. they are non-functional. These may become functional at some point in the future.

However, with most slow-growing NETs, this does not mean terminal as there are various treatment options even at Stage IV.  In fact, NETs are one example where surgery at the metastatic stage can often provide prognostic advantages denied in other more aggressive types of cancer at the same stage.  However, it’s true to say that many NET patients regardless of tumour type or grade and stage of tumour, need to live with quality of life (QoL) challenges.

I sense a change of thinking about people living longer with cancer and the reasons are fairly obvious.  Due to better diagnostics and treatment (including for NETs), more people are now living with their cancer; and as a species were are actually living longer. Add the two together and you can see why the big charity organisations are now saying that one in two people will develop cancer at some point in their lives. Ergo – as we live longer we are more likely to come into contact with cancer on the basis that age is a big factor whether someone gets it or not. Now that sounds pessimistic but this needs to be put into context. For example, in UK today, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%).  This means the number of people who get cancer but die from another cause has doubled over the past 20 years. According to Macmillan Cancer, the cancer story is changing. What was once feared as a death sentence is now an illness that many people surviveA small bit of research indicates this type of thinking is becoming more apparent in other countries too. As survival rates increase, so too will the number of people living with the legacy of cancer and its treatment.

HOWEVER!

Although more people are living with cancer rather than dying from it, quality of life must be a factor going forward.   Any quality of life campaign fits nicely into the existing challenges faced by many Neuroendocrine Cancer patients who need support well beyond their diagnosis and treatment and for some time.

I consider these campaigns additional help in fighting our corner.  And of course we need help because for many NET patients there will be no remission, there will be no cure.  Cancer patients need more support after a cancer diagnosis.  NET patients are effectively already in this position and have been for some time.  We have been at the forefront of a group of people living with cancer and needing close support and surveillance.  For example:

Late diagnosis. People will be dealing from the effects of late diagnosis which has resulted in metastatic disease –  and some people will have been fighting misdiagnosed illnesses for years.  That takes its toll.

Consequences of Surgery. People will have had surgery which in many cases is life changing – various bits of the gut (gastrointestinal tract) are now missing, lungs are now missing – many other locations will have been excised or partly excised.  These bits of our anatomy were there for a reason and QoL takes a hit when they are chopped out. Many patients succumb to gastrointestinal malabsorption

Inoperable Tumours and Syndromes. People will be dealing with remnant and/or inoperable tumours which may or may not be producing an associated NET syndrome (some of the symptoms can be rather debilitating in the worst cases)

Consequences of Non-surgical Treatment.  Additionally, people will be dealing with the side effects of multi-modal non surgical treatments, such as somatostatin analogue hormone therapy (Octreotide/Lanreotide), chemotherapy, biological therapy (mTOR inhibitors) (i.e. Everolimus (Afinitor)), biological therapy (protein kinase inhibitors (i.e. Sunitinib (Sutent)), radionuclide therapy (i.e. PRRT).  Whilst it’s great there are a wide range of therapies, they all come with side effects.

Secondary Illnesses and Comorbidities. Some people will have gained secondary illnesses in part due to the original cancer or treatment – i.e. somatostatin analogue hormone therapy can have a side effect of increasing blood sugar to diabetic levels and reduce thyroid function.  There are many other examples.

Finances. NET Cancer can be an expensive cancer to treat and this is exacerbated by the length of time the treatment lasts.  Whilst people have access to free public services or private insurance, many people will end up out-of-pocket due to their cancer.  Over time, this adds up.

Emotional Aspects. Many NET patients are kept under surveillance for the remainder of their lives.  With that comes the constant worry that the cancer progresses, tumours get bigger, new tumours show up, treatments are denied (i.e. PRRT in the UK).  It’s no surprise that anxiety and depression can affect many patients in these situations. To some extent, there can be a knock-on effect to close family members and carers/caregivers where applicable.

Living with Neuroendocrine Cancer is not easy – it takes guts (both metaphorically and literally).

Awareness of the issues surrounding diagnosis is important and remains so.  However, I believe more focus should be placed on support for those living with Neuroendocrine Cancer and it’s consequences.  So …. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for quality of life

Remember – they are no longer rare.

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!


 

Neuroendocrine…..the little suckers get everywhere!

little-suckers.jpg

One of the key milestones in my awareness campaigns occurred when I featured as a guest blogger for one of the biggest cancer ‘support’ organisations in the world – Macmillan.

The aim of the blog ‘Sorry I’m not in service’ was actually to highlight the consequences of cancer and its treatment (a Macmillan Campaign message); and to a certain extent to highlight the conflict that can often exist between work and cancer. However, it was also a fantastic opportunity for me to grab the interest of the general population with the word Neuroendocrine’.  The response was amazing and on twitter it was one of Macmillan’s most retweeted posts over that period.  The Macmillan Facebook post was also very popular and still rising with over 500 likes and over 40 shares so far.

There are some great comments on the post and the one which stuck out most is now the title of this blog article. I’ve always thought the ‘anatomy’ factor was a strong awareness message for Neuroendocrine Cancer and I outlined this in an article I wrote last year entitled ‘The Human Anatomy of Neuroendocrine Cancer’There are not many cancers which have the anatomical reach of Neuroendocrine Cancer –  the ‘suckers’ can indeed get everywhere!

Although there are common areas for Neuroendocrine Cancer to pop up, there are also many rare locations.  I was therefore both astonished and delighted when the Macmillan Facebook post brought together two people from UK diagnosed with a NET of the nasal cavity, an extremely rare location for any cancer.

Why is the potential distribution of NETs so wide?  Neuroendocrine Cancer is nearly always formed in the diffuse neuroendocrine system, which is made up of neuroendocrine cells found in the respiratory and digestive tracts. The respiratory tract includes the bronchial tubes and lungs. The digestive tract starts at the mouth and ends at the rectum. Neuroendocrine cells are also found in the endocrine glands, such as the adrenal glands, pancreas, thyroid, parathyroid and pituitary. These cells are also found in the ovaries and the testes.  However, these ‘little suckers’ have a propensity to spread (metastasize) and can end up in even more obscure sites throughout the body.  When you carry out a bit of light research in reputable areas plus taking into account their metastatic tendencies, you end up with a list like this:

Small intestine (small bowel)

Lung (including the pulmonary pleura)

Pancreas

Appendix

Stomach

Large intestine (large bowel or colon)

Rectum

Adrenal Glands

Liver

Gallbladder

Bile Ducts

Kidneys

Spleen

Ovaries

Uterus

Testicles

Prostate

Seminal Vesicle

Parathyroid

Thyroid

Tongue

Cheek

Larynx

Thorax

Bronchus

Oesophagus

Thymus

Pituitary

Pineal

Brain

Breast

Epicardial

Eye – including Retro-orbital (situated or occurring behind the orbit) and the choroid (vascular structure supplying the outer) 

Mesentery (keeps the small intestine in place against the abdominal wall)

Abdominal wall

Peritoneum (lining of the abdominal cavity)

Retroperitoneum (behind the Peritoneum)

Nasal Cavity

Skin (Merkel cell)

Bones in general

Sacrum – the large, triangular bone at the base of the spine

Lymph Nodes – mainly in the area of the Mesentery, Peritoneum, Retroperitoneum, Chest Wall; but also in distant locations such as axillary (armpit) and supraclavicular (collar-bone area)

Bladder wall

 

 

Did I miss any?  Feel free to add!

 

 

Thanks for reading

Ronny

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

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

On twitter?  How about retweeting this tweet?