The sooner any cancer can be correctly diagnosed, the better chances of a complete cure for the person concerned. However, some cancers are not as easy to diagnose as others. Neuroendocrine Tumours (NETs) is one of the difficult to diagnose cancers due to the vague symptoms which may be mistaken for other diseases and routine illnesses and there are reports of some lengthy diagnostic delays. In many cases, it can be very quiet.
In some cases it can be a little bit noisy. For example, the most common misdiagnosis appears to be irritable bowel syndrome (IBS), asthma, or menopause. Patients complain of abdominal pain, wheezing, shortness of breath, diarrhea, flushing, palpitations and a whole host of other minor issues. There are even extreme cases where patients have been told they may have a mental illness following constant visits to their local doctors. These cases can lead to months or even years of delay from the onset of symptoms, with around half of patients diagnosed at an advanced stage of disease and metastases at initial presentation. I have heard of very extreme cases where people have waited 15 years (plus) for the correct diagnosis.
I’m not totally up to speed on what happens overseas, but in the UK, you normally only have 10 minutes (5 in some scenarios) to see a doctor (although my own experience is that many ignore that rule and if they sense a big issue). No matter how hard we push, this can sometimes be insufficient to diagnose or even suspect NET cancer (or indeed many other cancers). A NET Cancer diagnosis is more likely to be as a result of a number of visits where a picture can emerge and even then, a referral to a specialist may not necessary lead to an immediate discovery of a NET cancer – this is pretty normal. Anyone who is diagnosed with NET Cancer on the first visit to any medical professional is extremely lucky! Ditto for many cancers, I’m sure.
As part of an increase in awareness at primary care level (PCP/GP) in the UK, NET symptom booklets (patient pathways) were sent to every GP in the country, encouraging referrals to the relevant NET clinic with at least 5000 paper copies distributed by NET patients and their supporters. This is an ambitious initiative but I am of the opinion that our limited resources should be more focussed on secondary care as that is likely to be the place where nearly all diagnoses will be made. There is no harm in targeting GP/PCP but they are more likely to be following instincts by referring due to symptoms rather than in the game of diagnosing obscure cancers which look like other things. I’m a big believer in primary care being the trigger for ‘something‘ which will hopefully be figured out at secondary care where you are more likely to get access to scans etc.
However, even that might not stop it from growing inside you very quietly for many years. In my own case, I appear to have had an above average diagnostic experience with some luck on my side. Despite this, I was diagnosed with cancer at an advanced stage (the luck bit is because I would have eventually became quite ill). One thing I always say to people is that the patient has a big part to play in their own diagnosis – check out my patient diagnosis video where you will see I was not really playing my part. Click here to watch the 3 minute clip.
NET Cancer is dangerous. It has a propensity to metastasize meaning that the chance of a curative scenario is vastly decreased. There are reports confirming the incidence of NET Cancer is on the increase and it’s no longer rare – I’m certain this is due to increased awareness and more efficient diagnostic tools and as the latest England incidence data confirms, much of it is due to better reporting methods (Lung NETs and Pancreatic NETs now being reported as NETs rather than Lung and Pancreatic Cancer respectively, particularly at Grade 3.
However, it’s probably true to say the term ‘silent cancer’ or ‘quiet cancer’ is apt even in those who are fortunate to be diagnosed at an early stage. I mean, how do you detect something that is silent?
Neuroendocrine Cancer – shh! can you hear it?
By the way, Neuroendocrine Cancer hates awareness so share share share!
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