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.
A review of autopsy cases in Australia found that 0.05% had undiagnosed Pheochromocytoma / Paraganglioma. I’m sure I could find more if I kept researching ……..spoiler alert – it isn’t a rare cancer. Even the results from the largest and latest data analysis 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 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 article where 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 detect something 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!
Thanks for reading