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 campaigns. Neuroendocrine Cancer – also known as Neuroendocrine Tumours, or NETs for short, is one such cancer. 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 that this happens to most NET patients. I have heard many many stories from people who have had a speedy diagnosis, even those where their cancer had advanced silently to a metastatic stage (I myself am in that category). And you can still see several specialists within a short period of time – 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 a cancer. This is why I have little faith in patient surveys. The problem with some of the NET Cancer survey statistics is that the reach is nearly always limited 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 patients a platform disguised as a survey is like ‘situating the appreciation’. On certain forums, it can often be like pushing at an open door. It’s a difficult area but we need a new model for capturing patient opinion.
Like many other Cancers, Neuroendocrine Cancer 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. 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, although this is probably still far from being 100% accurate. In short, it’s been underdiagnosed and under-reported for decades. Consequently, it’s not as ‘rare’ as we have been consistently told. In England, the latest figures from Public Health England indicate an annual incidence rate of 8/100,000 – to put that into perspective, one patient every 2 hours. Eminent NET specialists in USA are now suggesting there are 200,000 undiagnosed cases in that country adding that the autopsy rate of ‘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. Spoiler alert – it isn’t rare.
So how did I fare with my own diagnosis? I’ve always thought myself luckier than most, mainly because I’ve read a lot of awful stories. 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 thought I’d lost a ‘few pounds’ in weight whilst at a routine clinic a month before referral. Fortunately, I had a pretty thorough and professional nurse who made me have a blood test ‘just to be sure’. My 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 hemoglobin – 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 (……notwithstanding the Pathologist’s expertise). 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.
Sometimes with Cancer, you need a bit of luck and I never really think of my diagnosis as late. It had silently metastasised and perhaps that’s just how the cookie crumbles with certain illnesses? I’m fairly certain modern detection and screening will help alleviate this and other cancers/conditions in the future – but we are not there yet. However, 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 was not suspecting it 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 it through scans and a biopsy.
‘If your Doctors don’t suspect it – they won’t detect it’ is a great cliché – but not practical 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 cancer BUT ……. a referral for something else can be a trigger for a diagnosis of Cancer. In fact, I suspect this is a very frequent scenario. A picture of your insides is key, regardless of what your physician is suspecting. In short, you don’t really need to suspect NETs to detect it.
However……if your Doctors don’t suspect something, they won’t detect anything!
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