There’s a lot of scary diseases in this world but some of them are particularly spooky. One such spooky disease is the lesser known type of cancer that infiltrated my body – Neuroendocrine Cancer (aka Neuroendocrine Tumors or NET for short). Not only is it scary and spooky, but it’s also cunning, devious, misleading, double-crossing, and it likes nothing better than to play tricks on you.
It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum and a host of other places. It can be fiendishly small to avoid being seen. Once it’s established in the primary location (….or locations), it will try to break out via your blood and lymphatic systems. It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones and any other place it can get to.
It can often be uncannily quiet, not showing any symptoms. However, sometimes it wants to have fun by over-secreting certain hormones to add or introduce symptoms which mimic many other conditions such as IBS, asthma, abdominal upset, diarrhea, flushing. These are just more tricks up its sleeve. You will go to your doctor, perhaps many times, to report what looks like routine/regular symptoms. Unfortunately, it’s also really good at tricking your doctors. After several visits and despite your concerns, your doctors could become so frustrated that nothing serious is obvious, they might even start to think it’s all in your head. This is exactly what Neuroendocrine Cancer wants, it’s just getting started.
One particular type of NET has a wicked trick up its sleeve. This one will over-secrete a hormone called Serotonin which can often cause fibrosis in your abdominal area, potentially causing obstructions and damage to major organs and blood vessels. It’s not finished though, it will also try to introduce fibrosis to the right side of your heart causing more life threatening issues. In addition to common symptoms of flushing, this type and others will also make you feel weak, fatigued, pain, agitated, anxious, dizzy, nauseous, jaundiced, acid reflux, skin irritation, anemic, lose weight and give you heart palpitations. It’s a real Witch’s Brew of symptoms and living with it is often not easy. Its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.
However, it has a ‘finale’ trick. Neuroendocrine Cancer actually wants to kill you, and if it’s left to plough its relentless path throughout your body, that’s exactly what it will do, slowly but surely.
It’s not just slow and scary, it can also be deadly. Spread the word and help save a life.
If you are suspicious you have Neuroendocrine Cancer but not yet formally diagnosed, you may appreciate this article.
One of the key aims of my blog is to create more awareness of Neuroendocrine Cancer (or NETs), its peculiarities, its effects, its ability to deceive, its ability to kill if left undetected and/or untreated; and its impact on Quality of Life (QoL). There are millions of people out there doing similar with thousands of other conditions. That means even to stand out a little, messages must be compelling, must attract attention; and must catch people’s interest.
In the last 36 months, I’ve generated a few ‘different’ awareness campaigns, some of which have been more successful than others and I learn from this. One of them is actually now the most tweeted post about NETs on twitter. Fortunately, I have had significant help from YOU because if you did not share my posts and blogs, they would not have the potential reach they currently do and would not, therefore, attract the new audiences I’m looking for (….and finding!). The same applies to Facebook, twitter and other parts of the social media universe. I thank you all for the help to date. However, the job is far from finished!
My main campaigns are listed here so please help yourself to the ones you like and feel free to support or sponsor. Please note there are social media sharing buttons at the bottom of each post – or just simple cut and paste as required.
Neuroendocrine Cancer would love you to ignore this post. This is a reverse psychology message which is designed to attract attention – and it does!. It is currently the most tweeted post in the history of NET Cancer awareness. If you are on twitter, please retweet the original post (quoting it in a new post is also great but please also retweet the original). The tweet can be found by clicking here. It’s also a great awareness post for any type of social media so please share as it gives a really simple and yet compelling awareness message about the danger of NET Cancer and ignoring symptoms, including after diagnosis. Click here then share.
Living with Neuroendocrine Cancer – it takes guts! This is a powerful message which lets people know what effects the consequences of Neuroendocrine Cancer and its treatment have on people’s lives. It’s not a pity party – I don’t do those (as you well know).
I also emphasise that it’s not all about diagnostic difficulties (as important as that might be), more focus needs to be placed on LIVING with NETs given that it is a highly prevalent cancer, and no longer rare.
The diagnostic angle was relevant 10 years ago but the focus needs to become much wider thus why the community needs to shift from the ‘same old same old’ to a ‘different new’. This post has attracted much interest from new audiences in the wider healthcare world. Read and share it by clicking here
Neuroendocrine Cancer – ssh! Can you hear it? This is the NETs is ‘silent’ theme and attracts a lot of support. This really drives home the devious nature of NETs, the fact that it can be a very silent cancer until it’s too late and the difficulties that it presents with accurate diagnoses and subsequent ongoing monitoring. The post can be found by clicking here
The Human Anatomy of Neuroendocrine Cancer. This is a campaign to point out that NET Cancer is not confined to a particular part of the body and raises the issue of misdiagnosis, incorrect naming and recording of cancer types; and the loss of awareness opportunities, particularly when famous people are involved. I never get fed up of sharing this one and it cannot be shared too many times! Please feel free to share the hell out of this one. The post can be found by clicking here
This is an awareness message to emphasize that there are a number of different syndromes involved in NETs in different parts of the body and that terminology and understanding is important to get the awareness messages right. Click here.
Every day is NET Cancer Day. This post has had the largest number of 5 star ratings input by readers indicating support for my awareness strategy. Don’t get me wrong, 10 Nov is special but the other 364 days also present awareness opportunities. You can read this blog by clicking here. You can also register for my NET Cancer Day Social Media Event leading up to 10 Nov by clicking here and select ‘Going’ (then invite others please). On this event, Every Day is NET Cancer Day!
Let’s raise our ‘sites’. This awareness message also emphasizes the anatomy of NETs and the importance of the correct terminology in order to get the optimum and accurate awareness messages over. I’m using the word ‘sites’ as a take on ‘sights’ – someone picked me up for spelling last time I posted! Click here to read.
The 9 posts above comprise around 20% of my total blog hits and these are the ones which are attracting new audiences who now know about Neuroendocrine Cancer and are telling others. Please help me build on this.
Neuroendocrine Cancer can be silent but we shouldn’t be!