6 years ago today Chris and I flew off to Barbados on holiday. Both of us were looking forward to a nice break after a hectic start to 2010. When we got back, we both agreed it was the most relaxing holiday we had ever been on. It was heaven.
However, whilst I was lying on a sunbed soaking up the Caribbean sun drinking ‘pina coladas’, Neuroendocrine Tumours were growing in my small intestine, spreading into my mesenteric lymph nodes, into my liver, into my left armpit and into my left clavicle area. The excess serotonin being released was causing a dense fibrotic retro-peritoneal reaction (desmoplasia) encircling my aorta and cava almost blocking the latter. That problem alone might have been the end of me.
Just prior to going on holiday, I knew I had an issue with a low haemoglobin blood test and was waiting to be told what would happen next. However, I wasn’t even the slightest bit worried, this was ‘something and nothing’ despite the fact that I’d been ignoring a minor flushingsensation for 6 months. When we returned from holiday, there was a letter of referral to a local anaemia clinic in 5 weeks time. To cut a long story short, I bypassed that and went straight to a Gastroenterologist and was diagnosed very shortly after with metastatic Neuroendocrine Cancer.
In a previous life, I used the term ‘smoke and mirrors’ quite a bit. I was used to dealing with many different types of people, some who wanted something, some who wanted to buy or sell something. Most of the time it was overt but the devil was usually in the detail. Sometimes there was an element of ‘covertness’ or a ‘hidden agenda’. It was always tricky working out the details of the hidden agenda and sometimes it was only known when it was too late. Some of you will already be seeing where I’m going with this line of thinking – if so, you worked out my hidden agenda!
‘Smoke and Mirrors’ is basically a term connected to the art of deception, a con trick, a way in through confusion and trickery (think magicians on TV!).
Whilst certain cancers can appear with precise symptoms and leave you under no illusion what you’re facing, others can be a bit more circumspect – Neuroendocrine Cancer can be one of those. It will fool you into thinking you’re not even ill and even when it puts its head above the parapet, this can come over as a routine illness and/or vague symptoms which will deceive both you and your physicians. Thus why awareness is really important. I won’t repeat my key messages but you can find them here in my blog entitled “Neuroendocrine Cancer can be silent – but it doesn’t mean we should be”– the more these posts and ones like it are shared, the quicker we can discover the hidden agenda.
I have another hidden agenda! I was inspired to write this post by my friend and blogger Shannon – she writes a blog called ‘A tale of two tumours’. I really like this blog because there are no hidden agendas, what you see is what you get and she has catchy titles. I also like Shannon because she has a great attitude despite the fact that she is probably still looking for the ‘hidden agenda’ or at least bits of it (then again perhaps we all are?).
Shannon has one of the uncommon variants of our disease, one of those tricky cases it would seem. Her issues started some time ago and she was eventually diagnosed with Cushing’s Disease (see my Syndrome blog). She has previous issues with pituitary, parathyroid and recently diagnosed with a Thymic NET. She believes there is a potential connection with MEN1 (see my blog Running in the Family) but this is currently dismissed by her physicians.
There is potentially a new problem outlined in her latest blog which inspired me to write this post. She has a very strange symptom in that she can smell smoke despite there not being any smoke and this happens in different locations. Her latest blog is her story about this symptom and what happened next. Excuse the language but I would be frustrated too! Read the blog ‘Where there is smoke …..’ by ‘clicking here’.
I wish Shannon well and hope she gets some answers – no more tumours please. You are a survivor!
Thanks for listening
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New treatments seem to be appearing every month and that is good news for patients. I have a personal connection to this one though. In 2014, Chris and I walked along Hadrian’s Wall, a 2,000-year-old World Heritage structure in Northern England. This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals). It is the first ever deployment of this type of treatment in UK and Chris and I were happy to shred the soles of our feet to support this worthy cause, particularly when the two guys behind the idea were my surgeon (Mr Neil Pearce) and my Interventional Radiologist (Dr Brian Stedman). Both of these brilliant and skilled people ‘worked on me’ for 12 months in 2010/2011 and I live to tell you this tale! Shortly after my surgery, they decided to set up PLANETS to focus on providing additional support for Neuroendocrine Cancer and other types such as Pancreatic and Liver in which they specialised.
Intra-Operative Radiotherapy (IORT) provided by Mobetron is a bit of a game changer for advanced cancers which are hard to treat and remove. This development is said to be at the cutting edge of modern radiation oncology. Despite the heading, this treatment can be used for many cancers including Neuroendocrine, Pancreatic, Colorectal and Bladder. It is a mobile version and can be moved to different operating theatres. There are plans to eventually extend the portfolio to include Head and Neck, Oesophageal, Lung, Breast and Cervical cancers. The technology can also be used on Brain tumours but there are currently no plans to offer this service.
The radiotherapy is applied during surgery which means the treatment can be delivered more directly without causing damage to surrounding tissue and organs. It’s worth adding at this stage that this type of radiotherapy is not the same as PRRT. Moreover, it is not designed to replace PRRT which remains an option for patients downstream if they still need it (in addition to other treatments such as Sirtex, liver emobolisatons). Clearly dosage calculations would be required for cumulative radiation exposure over short timescales. Worth noting that PRRT currently remains denied to patients in England.
The type of radiotherapy is more similar to conventional external beam systems and the key advantage is that it can be used for areas where tumours have just been removed or part removed or in locations which have a tendency to recur; and for inoperable tumours such as those surrounding vital structures. Examples include: bulky pancreatic tumours, inoperable mesenteric root lymph node deposits, difficult pelvic tumours, metastases around the bladder, rectum or uterus and ovaries. It follows that in addition to treating certain tumours earlier than would normally be possible, IORT may preclude the need for further treatment or at least extend the period post surgery where further treatment would be required.
Clearly there is a lot of excitement surrounding this first ever deployment of IORT which has raised the profile of Neuroendocrine Tumours in the UK national press – check out this article in the Daily Mail by clicking here. There is a useful animated video to watch by clicking here.
The official launch happened on Mon 13 Jun 2016 and Chris and I were very proud to attend.
Thanks for reading
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There’s a frequently asked question on certain forums along the lines of “how will I die of my Neuroendocrine Cancer?“. Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question but I believe there are times and places for it and that a public forum is not the place to have it. The vast majority of people do not go to a forum to find out how they might die. I can see a list of search terms for hits on my blog site (I don’t know who searched just what was searched). Would you believe this also appears from time to time? I just hope they found this post!
I don’t tend to dabble in death – it’s just quite difficult to talk about it in a blog which is part designed to be positive and offer hope. So why am I talking about death inside this positive blog? Well, apart from thinking the thread mentioned above might scare readers who are already frightened by their diagnosis, perhaps quite recent, and do not want the answer to this question, I also think it might be perceived as a bit ‘glass half empty’. Both of these things are not good, thus why I believe the question should be between the person wanting to know and a specialist.
I also believe the “how will I die of Neuroendocrine Cancer” question is a really big assumption about the cause of death. Why? There’s an increasing chance a person with cancer today will die of something else. 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. The cancer story is changing and a quick bit of research confirms it’s changing on a worldwide basis.
On a similar subject, for those looking online for NETs prognostic data, I offer the following advice:
Be careful surfing the internet, some sites have NETs prognostic data from the ark.
Even if you find the very latest data, interpretation is difficult due to the heterogeneity of NETs, different stages and grades, comorbidities, age and no doubt many other factors. Please also note the ‘very latest’ data is probably a few years old.
It’s a difficult question even for a specialist.
I’ve lost count of the number of people who have told their story about being told a period of time from their specialist (including use of the word ‘terminal’) and they are still here a significant period after, in some cases 10 x what their specialist said.
AND DEFINITELY Check out the comments on this Facebook post – here (over 400 people like this post so far – so press that button!)
Here’s a much better question people should be asking ……“How do I live with NETs?”
Fear won’t stop you dying but it might just stop you living.
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!
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: