The term Global War on Terrorism was first coined by US President George W Bush in late September 2001. In summary it was a call to hunt out and destroy terrorism wherever it could be found. That war continues today. However, I was interested last week to hear US President Barack Obama demand that the world take action against the “cancer” of jihadist extremism. Ronald Reagan is also reported to have used the ‘cancer’ metaphor in relation to terrorism back in the eighties. It would appear that ‘terrorism’ and ‘cancer’ are bound together to some extent, well at least until one of them is defeated.
Science and medicine writers are frequent users of ‘war’ metaphors in the battle against cancer (see, I could not complete the sentence without reference to a ‘war’ word!). Some people actually disagree with the use of military language within cancer articles and presentations. They suggest the words are used in an attempt to help patients but can actually have the opposite effect. I disagree with this view, I think military language is ideal for use in this fight – see, I did it again 🙂
However, there is another global war ongoing against the very metaphor used by successive US presidents to categorise terrorism. In fact there is some research to suggest that this war began in 1971 with the signing of the National Cancer Act (Richard Nixon). Although a legislative act for the US, other nations would have taken note and reviewed their own policies and commitment. Despite growing and ageing populations, you can see from available statistics that the fight against cancer is being won. However, certain cancers still lag behind.
As you can see from my blog statistics below (please take a look!), Neuroendocrine Cancer does not appear to be unique to a single country or continent, it’s very much a global issue (or at least there are people in those countries interested in my blog!). The incidence is fairly similar across the globe from the statistics available – anything between 2 – 6 cases per 100,000 of the population – i.e. its rare!
The International Neuroendocrine Cancer Alliance (INCA) is the global advocate for neuroendocrine cancer patients. Online, they appear to operate under the cover of NET Cancer Day http://netcancerday.org/ They are also on Facebook and Twitter. Every year on NET Cancer day (10 Nov), their voice gets louder in support of Neuroendocrine patients. I won’t repeat any more detail here as it would be good if you would take some time out to look at their website and join them in support of the Global War on NET Cancer.
Make a note in your calendar for 10 Nov – I’ll be at home having a ‘coffee and cake’ morning and I might even invite some of you who are reading this! However, don’t forget your wallets and purses as every penny helps with the ‘fight’ 🙂
One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are much more difficult to diagnose than others and this increases the need for more awareness and education campaigns.
Under-diagnosed or Under-reported?
Like many other Cancers, Neuroendocrine Cancer (known as Neuroendocrine Tumors or NETs) is one of a number of ‘difficult to diagnose’ conditions with some of its variants more difficult than others. It’s a less common form of cancer but with a fast rising incidence rate, possibly the fastest rising incidence rate of all cancers. In fact, its fast rising incidence rate has been a positive in some ways, contributing to awareness and the introduction of new treatments. In some respects, the incidence rate increase is due to people knowing more about it (…… particularly medical staff), diagnostic tools have improved; and critically …….. the correct ICD codes are being applied by physicians to enable accurate cancer incidence data (although this is probably still far from being 100% accurate in favour of NETs). In short, it’s been under-diagnosed and under-reported for decades.
Consequently, it’s not as ‘rare’ as we have been consistently told. For example, in UK, the latest figures from Public Health England indicate an annual incidence rate of 9/100,000 – to put that into perspective, one patient every 2 hours and above the rare threshold of 5/100,000. In USA, the latest SEER database figures indicate that the prevalence figure extrapolated to 2017 has accelerated beyond 200,000 (i.e. not rare). Eminent NET specialists in USA are saying it’s not rare and one centre is even suggesting there are 200,000 undiagnosed cases in that country, also adding that the autopsy rate of (so-called) ‘carcinoid‘ finds is four times higher than the documented diagnosis figure.
Is patient and patient advocate organisation reported data accurate?
Statistics indicate that many patients are initially diagnosed with something else and it occasionally takes some time to be formally diagnosed with NETs. However, it’s wrong to suggest this happens to most NET patients. I’ve heard many stories from many people who have had a speedy diagnosis, even those where the cancer had advanced silently to a metastatic stage (I myself am in that category). Unfortunately these don’t tend to be mentioned a lot on social media and they don’t tend to be the people who complete questionnaires for NET patient surveys. Another oddity in survey data is that you can still see several specialists within a short period of time and have an excellent diagnostic experience – it’s the time that is important not the number of people you see in between. It’s also a myth to suggest that you only need to see one doctor to be diagnosed with any cancer. The fourth person I saw officially told me I had cancer but the gap was only 2 months (half of that was my own procrastination). This happens with many cancers, NETs is not special in this regard.
The problem with some of the NET Cancer survey statistics is that the reach is nearly always drawn from a limited audience and therefore the data can be skewed, particularly when the target collection is in the main from patient forums or groups where the ratio of problematic diagnoses is high. Offering these patients a ‘platform’ disguised as a survey is like ‘situating the appreciation’. On certain forums, it can be like pushing at an open door. This is why I currently have little faith in NET patient surveys. It’s a difficult area but we need a new model for capturing the whole spectrum of patient opinion. One positive statement from the recent SEER database study mentioned above…… the increase in incidence is partly due to earlier diagnosis. Clearly there’s more work to be done but it helps to dispel the myth that every NET patient was misdiagnosed for years. No medical corroboration is done, i.e. if a patient says they were misdiagosed, that doesn’t mean that’s an accurate statement from a medical perspective. I have it on good authority that some people who were diagnosed with IBS actually did have IBS, but it was masking the NET, the same is probably true for other symptoms/conditions. PCP/GP guidelines for diagnosing IBS clearly need updating.
Sure, some people will be misdiagnosed and that is no different to many difficult to diagnose conditions. But to suggest this is the most common outcome is way off beam. There are thousands of incidental diagnoses of NETs when checking for other issues – these don’t make good headlines though thus why we don’t hear much about it. Only a very small percentage of NET patients are on forums so it’s not a good measure of how many people got a quick diagnosis vs the opposite. Only a very small percentage of people are on the mailing lists for NET Advocate organisations, so in reaction to patient surveys put out by NET advocate organisations, who will also use patient forums to disseminate, neither are those a good measure of who got a quick diagnosis and the opposite. Ergo, NET patients surveys are always wrong.
So how did I fare with my own diagnosis? I’ve always thought myself luckier than many. I suspect the best I could have hoped for was diagnosis about 20 months prior to ‘D-Day in July 2010. My problem at the time was so vague that I could see myself there wasn’t much justification for expensive tests (i.e. scans). Moreover, by the time I got to see a specialist in 2008, the problem had settled and I was content. Even my second referral to specialists in May 2010 was random as I hadn’t initially intended to say I’d lost a ‘few pounds’ in weight whilst at a routine clinic. Fortunately, I had a pretty thorough and professional nurse who made me have a blood test ‘just to be sure’. My GP immediately referred me to a specialist. The referral specialist was pretty much on the ball. He was looking at a (then) 55-year-old fit and healthy looking male presenting with low haemoglobin – boom! CT scans, ultrasounds, blood tests, the works – except he could not pin down the exact cancer type until I mentioned facial flushing. Eureka, he knew and correctly predicted the results of the forthcoming liver biopsy. It must be said that even if he didn’t know or hadn’t heard of Neuroendocrine Cancer, the biopsy was key to finding out but the scan was the trigger. However, the damage was done and I now live with an incurable metastatic cancer. And I believe the damage was done back at my first issue in 2008. Despite this, I still feel lucky because I’m not dead. I do often wonder what would have happened had I not had that initial blood test. Check out this video of me explaining my diagnosis.
Luck plays a part, so does patient intransigence.
Sometimes with Cancer, you need a bit of luck and I never really think of my diagnosis as late, just unlucky to begin with (not helped by my own indifference to illness) and then geographically lucky as the diagnostic ball starting rolling. It had silently metastasized and perhaps that’s just how the cookie crumbles with silent illnesses in the absence of a whole population screening programme. I’m fairly certain future detection and screening will help find most cancers/conditions earlier as technology and science progresses – but we are not there yet.
I am contacted almost daily from someone who is experiencing flushing and diarrhea but they have not been diagnosed with NETs. Many are quite up to date on the condition but lack any clinical evidence of NETs. It’s not cancer is not really a diagnosis so I feel for these guys who just need a diagnosis of something. If you are reading this and think you may have NETs, read this articlewhere I offer you some advice.
You don’t actually need to be a NET specialist to trigger a diagnosis of a NET
I was helped by three other things:
The nurse who sent me for a ‘just to be sure‘ blood test was not a NET expert but she was doing her job in a thorough manner and triggered my eventual diagnosis.
The GP was not a NET expert but he analysed the blood results, considered my healthy outlook; and then used his instincts and training to send me to a specialist (i.e. he was suspicious of ‘something’).
The investigating specialist was aware of NET Cancer but although he knew I had cancer, he was not suspecting NETs until I said I was having occasional flushing (something I hadn’t mentioned to the nurse or the GP). But he was suspecting ‘something’ and in the end, he did detectsomething through scans and then confirmed it through a biopsy.
Should we expect every single doctor wherever they are, and whatever their experience, to be able to diagnose a NET at first visit?
‘If you don’t suspect it – you won’t detect it’ is a great NET cliché – but simply not practical to expect at primary care and IMHO almost impossible. There are 200 different cancer types and some have a bunch of sub-types. And at primary care level, you can add another 10,000 non-cancer conditions. It’s impossible for anyone to know everything about every single condition, let alone every single cancer BUT ……. a referral for something else can very often be a trigger for a diagnosis of Cancer. In fact, I suspect this is a very frequent scenario which often fails to make the patient survey data. A picture of your insides is key, regardless of what your physician is suspecting. If you can see it, you can normally detect it.
In short, you don’t really need to suspect NETs to detect it. Awareness is really important but it needs to be realistic to be taken seriously.
……if your Doctors don’t suspect something, they won’t detect anything!
I think I first met Gym at school in the sixties – we normally met on a weekly basis. We were reacquainted when I joined the army and hooked up more frequently! It was there I met some of Gym’s friends, known as PTIs (Physical Training Instructors). Their opening line was normally “Ten times round my large bronze chest…… GO! ” and then we would proceed with the ‘beasting’. I suspect I might now be prodded by the PTIs on my facebook page – there are one or two out there 🙂
I’ve always been a fairly fit guy but over time my fitness had faded. I’m to blame entirely for this but I suppose it hasn’t been helped by a diagnosis of metastatic Neuroendocrine Cancer. However, I’m now turning this negative into a number of positives and getting fitter is one of them! One aspect of my recent Hadrian’s Wall walk was to see how I’d cope with a major physical and mental challenge. Walking was chosen as a low risk activity although it turned out to be quite tough!
At 58 years of age, I clearly won’t be making the GB 2016 Olympic team but my aim is to become fitter than the average 58 year old (perhaps 59 by the time I meet this objective…..). I started nice and slow today mainly the walking machine as a warm up and then straight onto a number of upper body exercises. I stopped or rested when I felt pain – didn’t want to overdo it at this early stage. I’ll keep building up my upper body strength on the machines but in a week or two, I’ll move onto running and the concept rowers for stamina.
My shoulders and arms are hurting from the gym work – that is an excellent sign 🙂
Geekie Gabble – reintroduced by special request from medical geeks!
I just completed my Chromogranin A (CgA) and 5HIAA tests this morning and then went straight to the gym! I undergo many tests but these ones are pretty important as they measure residual tumour bulk and activity. Other than signs of tumour growth showing on scans, they would be used to decide whether further treatment is required or not. I repeat these tests every 4 months currently.
The CgA blood test is an excellent marker to help detect and monitor the activity of Neuroendocrine tumors in general. CgA is a protein found in carcinoid tumor cells, and it’s normally secreted into the blood. Elevated levels of CgA are found in 80-100% of patients with Neuroendocrine tumors. When I was diagnosed, my test results were way out.
5HIAA is a 24 hour urine test using a 2 liter sample bottle! Those of you who have been paying attention to my blogs will know that Neurondocrine tumours can release excessive amounts of particular hormones especially Serotonin. When serotonin breaks down in the body, it is converted first to something known as 5-HT and then to 5-HIAA, which is then excreted into the urine. This gives the medical team an idea of how active the tumours are.
Both of these tests have been normal for the last 3 years with one exception where an elevated CgA for 2 consecutive tests became a factor in a decision to tackle some distant lymph node hotspots (one of which is still work in progress).
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I recently blogged about my boxing experience in post: http://wp.me/p4AplF-r7 In those days I was just a wee skinny 16 year old guy! I think I was in the Bantamweight category, somewhere between 8 and 9 stone (50 – 57 kg). Although I gained some weight after years of service in the military, I didn’t really ‘bulk out’ in the wrong places until I left the military aged 45. Even then it wasn’t what you would call overweight or obese. I joined a gym, determined to maintain some form of fitness. I sacked it due to pressures of work but then joined a few years later for another go. However, work and associated commuting took over again and I withdrew once more. In those days, I didn’t really weigh myself and relied on looking in the mirror as a guide :-)
I always remember weighing myself at the gym though and was consistently around 12 stone (76 kg). Wow that’s ‘Super middleweight’! I therefore assumed this was now my normal weight and thought nothing more of it. However, in 2010, at a routine GP sponsored Asthma clinic, a discussion about my weight sparked off a chain of events leading to a diagnosis of Neuroendocrine Cancer, A really, really innocuous discussion (or at least it was to me) about why I’d gone down from 12 stone to 11½ stone. You can read more details about this here: http://wp.me/p4AplF-1W and here: http://wp.me/p4AplF-bY.
After 4 years of treatment I’m now down to 10 stone (63.5 kg). My weight dipped to 10½ stone following two major bouts of surgery but I put it back on during recuperation. I did eventually get back to 11½ stone but in the last 12 months, my weight has now gone down to 10 stone – a 15% reduction from pre-diagnosis! This drop in weight is significantly greater than the one which led to my diagnosis. However, this was mostly controlled through minor changes to diet and exercise and puts me right in the middle of the green zone on the BMI chart! Additionally, my waist size has reduced from 34″ to 30″ since diagnosis. I haven’t had a 30″ waist for well over 30 years – cost me a packet in new trousers 🙂 All of that said, when I now look in the mirror, I do see that wee skinny lad from Dundee (as do others….)
So – am I now at my ‘fighting weight’? Probably but other weaknesses are potentially a hinderance! I’m not currently very strong physically and whilst I’m conscious of my increasing age, I do seem to generate aches, pains and minor injuries far too easily. The slightest bit of ‘garden football’ or manual labour inside or outside the house, seems to hurt more than it should. Walking isn’t a problem, I can walk for miles – see post: http://wp.me/p4AplF-iw – I’ve always had good legs! Plus much of that is in the mind and I’ve always been strong willed. In short I have no physical upper body strength and that is where my focus is now moving. My consultant has recommended the gym and armed with a GP referral, I start next week! My initial aims are to bulk up my upper body and to progress from walking to running to increase my stamina.
Watch this space!
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Most people have probably heard of the saying “is your glass half empty or half full”. If you said ‘half empty’, you have more of a pessimistic view on life; if you said ‘half full’, you tend to have more of an optimistic or positive outlook.
I don’t think a positive outlook actually means you permanently wear ‘rose tinted glasses’ and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way. I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to time. I’m only human and I’ve been in some dark places in the last 5 years since diagnosis. However, I believe to continuously be in ‘half empty mode’ can have a detrimental effect on your health, both physical and mental.
When I was first diagnosed with Neuroendocrine Cancer in 2010, I experienced a whole range of emotions from shock and denial, disbelief and anger followed by grudging acceptance. However, those emotions were quickly followed by what I can only describe as determination, tenacity, strength and rock-solid willpower to face what was in front of me. I cracked on with work as if nothing had happened with only a select few knowing my issue – that was the way I wanted it. I was very much in glass ‘half full mode’. The work took my mind off the cancer whilst I was put through an extraordinary amount of tests and pre-surgical treatment (Neuroendocrine Cancer/Carcinoid patients will understand what I mean). Eventually, I had taken so much time off for tests and treatment, my secret was out. I was about to embark on major surgery and potentially months off work, so the secret had to be exposed in any case. I’m not sure what worried me most, the fact that I had cancer; or that people now knew the invincible Ronny Allan was not superman after all 🙂
Since then I have made it my mission to keep my mind busy and to stay positive despite having something which is not curable. That’s not to say I don’t have bad periods and I’m 100% physically and mentally coping. As I said above, a glass half full outlook means you can approach potentially negative situations in a more positive and productive way. In fact, that strategy was used to lift me from a low point in 2013 to the declaration of a ‘new normal‘.
Like many other Neuroendocrine Cancer patients, I have numerous side effects of both the cancer and the treatment. As an incurable cancer patient, I need to keep an eye on my mind as well as my body. As a 60-year-old, I also have numerous aches, pains and ailments that most people of this age tend to suffer from and it would be very easy to automatically tie all of these in with my cancer. So I don’t.
That’s not to say I’ve become complacent. Far from it, I investigate issues in some depth and follow them up with primary and/or secondary care until I’m satisfied. Additionally, I’ve spoken with quite a few Neuroendocrine Cancer patients and I try to find out how they cope, how they get by. I also do this by reading the blogs or websites of cancer patients and if I feel inspired, I will follow their blog or subscribe to their site.
I don’t rely too much on patient forums for my ‘close support’. Some people tell me they completely avoid forums as they found them too negative and depressing. I know what they mean and at times I’ve been tempted to disengage from all sites. However, I’m conscious that some people are very worried about their condition, particularly during the diagnostic phase or pre-treatment, so I guess there are perceptions at play. As a 5 year survivor, I’ve since learned to filter out or at least try to understand someone’s concerns and I always attempt to inject some positivity and hope into any thread. That said, I’m now more of a ‘forum lurker’ and as some of them can be ‘minefields’, I’ve really cut down my presence.
In my blogs, I’m conscious that my own personal experience is not universal and I would never dream of suggesting that my opinions be substituted for someone else’s. However, I hope that for some people, they can relate to what I have said and take comfort from the fact that there can be light at the end of the tunnel even if it currently looks some distance away!
Finally, I am a strong believer that having a positive attitude is potentially life extending for a cancer patient. Therefore …… my glass is half full.
Thanks for reading
Ronny Allan – Living with Neuroendocrine Cancer!
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Apparently all Scotsmen wear kilts, have ginger hair, eat nothing but deep fried Mars Bars and they like a good fight!
Stereotyping is frequently used to wind people up and can on occasion be used in an irrational or insulting manner. However, I believe one of those attributes is accurate. I was once ‘volunteered’ for boxing because my home town was Dundee! Read on…
Dundee was put on the boxing map in the late fifties and in the early sixties due to the legendary Dick McTaggart who won a Gold and Bronze medal in two separate Olympic Games (for Great Britain). Many new boxing clubs sprang up in Dundee over this period and you can see the evidence of his legacy today. It’s also timely for this blog that Dundee erected a statue of him just a few months ago.
I left school aged 16 joining the Army as a Junior entrant and trained at Junior Tradesmen’s Regiment near Troon in Ayrshire Scotland, spookily where Dick McTaggart now lives! Once basic training was done and dusted, everybody had to be assigned a hobby. I didn’t really have something I was very good at, so my choice was made for me. According to my Sergeant, I was ‘allocated’ to the boxing squad because my home town was Dundee and therefore I must be a good fighter! As this was announced in public, my feathers bristled with the increased ‘street cred’ 🙂
Winning my first fight was probably a mistake – although as it was an ‘Inter-Company’ competition the celebrity factor was good 🙂 There were 3 x 1 minute rounds where me and my opponent (who had a much longer reach!) just swung our arms non stop hoping for contact and I won on points. The second and third fights were a blur and I lost both on points. I remember being knocked out in training and had to spend the night in the Medical Centre under observation. Interestingly, the knockout blow came from the fist of the guy who I beat in my first fight! The fourth fight was against a seasoned civilian and I lasted into the second round when the referee stopped the fight on the basis my opponent was ‘too strong’. As I had some memory issues after that fight, my sergeant decided to allocate me to the much safer hobby of ‘Rock Climbing’ 🙂
So the stereotyping backfired. The closest I’d been to fighting in Dundee was chucking a dustbin at someone up an alley down town and then beating a hasty retreat to a safe spot with other ‘friendlies’. That said, I did put 150% into the boxing training and became extremely fit. I never personally conceded any of my 4 fights – I won one, lost two on points and the fourth and final one was stopped by the referee – not my decision!
I’m fairly certain that my 18 month junior soldier experience increased my confidence and I started to realise I was not one to give up easily. That trait has remained with me throughout my life with words such as determined, tenacious, stubborn, strong-willed, forceful and direct having been used over the years to describe it. I took this trait into my second career as an ‘ex military’ person working with ‘civilians’. I remember numerous occasions when I had not been well but still turned up for work much to the annoyance of others. Once when it was suggested that I should go home and rest up, I replied that the only way I would be leaving the office against my wishes was on a stretcher. They laughed but I was deadly serious.
I suspect I’ve mellowed over the years as most people tend to do when they get older. However, this trait of mine has been quite handy in the past 4 years for fighting Neuroendocrine Cancer. I’m winning on points so far 🙂
Stay positive all!
p.s. I don’t own a kilt, I don’t have ginger hair and I’ve never eaten a deep fried Mars Bar 🙂
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