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Ronny Allan
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 notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as first-line physicians battle to deal with thousands of different conditions, many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often-silent nature, a late diagnosis is often a default scenario as no intervention was possible without a symptomatic patient.
Neuroendocrine Neoplasms – Under-diagnosed or Under-reported?
Like many other Cancers, Neuroendocrine Neoplasms (NEN) 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. Its stellar incidence rate increase has been positive in some ways, in that it has forced the issue of awareness, clinical research leading to the introduction of new treatments and plans for further clinical research now in the pipeline. 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 reporting being applied by physicians to enable accurate cancer incidence data (this is probably still far from being 100% accurate in favour of NENs). In short, it’s been under-diagnosed and under-reported for decades and despite improvements, these problems persist.
As a result of the under-diagnosing and under-reporting, 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, a key threshold figure. Eminent NEN specialists in USA are now 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 and now outdated) ‘carcinoid‘ finds is four times higher than the documented diagnosis figure. And I can almost guarantee you that Small Cell Lung Cancer (a Neuroendocrine Carcinoma) is being excluded from many data gathering exercises. For example, the declared incidence rate for this type of cancer varies between 10-15% of ALL Lung Cancer. The other really important point is that the rise in incidence rates is said to be partly due to the number of early-stage diagnosis (which includes incidental diagnosis due to imaging improvements) – this is good news as the earlier the diagnosis, the more chance of a curative scenario.
Even the results from the largest and latest data analysis ever conducted are said to have understated the true figures.
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 NENs. However, it’s wrong to suggest this happens to most NEN 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 NEN patient surveys – yet these diagnostic experiences are out there uncaptured. Another oddity in survey data is that you can still see several specialists within a short period of time and have excellent and timely 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 (and half of that was my own procrastination). This happens with many cancers, NENs are not special in this regard.
The problem with some of the NEN 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 mainly 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’. This is why I currently have little faith in NEN patient surveys. It’s a difficult area but we need a new model for capturing the whole spectrum of patient experience. 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 NEN patient was misdiagnosed for years. In most of these cases, no medical corroboration is done, i.e. if a patient says they were misdiagnosed, that doesn’t mean that’s an accurate statement from a medical perspective, and it shouldn’t be making it into advocate organisation statistics unfiltered. Every one of these claims needs to be corroborated with each doctor who was seen for related symptoms.
Sure, some people are misdiagnosed but to suggest this is the most common outcome is way off beam. There are thousands of incidental diagnoses of NENs when checking for other issues – these don’t make good headlines thus why we don’t hear much about it. Only a very small percentage of NEN patients are on patient 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, NEN patient surveys are always misleading.
Should we expect every single doctor wherever they are, and whatever their experience, to be able to diagnose a NEN at first visit?
Notwithstanding differences in the structure and processes of first-line care in different countries, I don’t believe it’s practical to expect an instant diagnosis of NEN at primary care. 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 because this brings more focus to the problem. In fact, I suspect this is a very frequent scenario which often fails to make the patient survey data.
I’m sorry but unless NENs gradually morph into one of the most common types of cancer (not going to happen in the short to medium term), I personally think it’s naïve to expect every single GP/PCP to be able to regularly diagnose it. I also believe it’s wasted effort attempting to educate first-line care in NENs – unless you have unlimited resources to try, which most organisations don’t. Also, and perhaps even a bigger challenge, you would need to get the attention of the first-line doctor community who are already overworked in some countries. Paper-based awareness is an option but that mostly end up as ‘shelfware’ in GPs offices. Efforts would be better spent at second-line care where the vast majority of NENs will actually be diagnosed and that’s the focus on regional NEN scientific organisations (ENETS, UKINETS, etc).
In short, you don’t really need to suspect NENs to detect it. Awareness is really important, but it needs to be realistic to be taken seriously. Let’s learn from scientific organisations. NEN knowledge and therapy has moved on, so should NEN awareness.
And awareness messages need to be the right ones!
What happened to me
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 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. 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 was intransigent but I don’t make the statistics, it’s not good ‘PR’.
You don’t actually need to be a NEN specialist to trigger a diagnosis of a NEN
Many statements are made that only NEN specialists can diagnose NENs but this is simply not true (notwithstanding the fact that in certain countries NEN specialists will not accept patients without a confirmed diagnosis of NEN). You can’t just google Neuroendocrine and relate that to your obscure symptoms and go straight to a NET specialist, you normally have to be referred, either via appointments with general practice or secondary care specialists in your symptoms/test results (often after incidental findings – a more common scenario than you think). In 2024 I saw a crazy statement from one organisation who said there were too many incidental diagnoses in NENs. Serioiusly! Look wider folks!
I was helped by three 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 NEN expert (not many are) 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 NENs but although he knew I had cancer, he was not suspecting NENs 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 detect something through scans and then confirmed it through a liver biopsy.
Note: clearly it’s very advantageous to be looked after by a NEN Specialist – these guys are the best “NET Detectives“
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Brilliant article Ronny. Very balanced and thoughtful. It does seem that NET Cancers, NEN’s are being picked up more often but can be dependent on how tenacious you or your medical professional(s) are. My experience was mixed. It took 2 years and 2 major operations to be diagnosed but once it was picked up and I was referred to my NET specialist things have been great. Keep up the good work Ronny 😊.
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Well done for not following the crowd!