An awareness post from Ronny Allan

The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned.  However, some cancers are in the ‘difficult to diagnose’ category.  Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays.  In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It’s SNEAKY!

In some cases, it can be a little bit noisy. For example, some of the most common misdiagnoses 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’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 NETs (or indeed many other diseases).

A NET 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 ‘symptom’ specialist may not necessarily lead to an immediate discovery of a NET. In fact, a ‘nothing serious found’ referral back from secondary care/specialist to a person’s GP/PCP is not uncommon.

There is no harm in targeting GP/PCP for awareness, 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 in secondary care where you are more likely to meet specialists and get access to the right tests and scans etc. There is data to suggest that ‘symptom specialists’ frequently refer patients back to primary care, another reason indicating education at the secondary care level may be a better focus for NET awareness.  NETs are potentially dangerous despite the normally indolent course.  Certain types have a propensity to metastasise meaning that the chance of a curative scenario is vastly decreased for many. It can kill if left untreated.

There is new data confirming the incidence of Neuroendocrine Neoplasms (NEN) is on the increase and it’s no longer rare – I’m certain this is due to increased knowledge, more efficient diagnostic tools (including Ga68 PET Scans), and better reporting methods, e.g. Lung and Pancreatic NETs now being properly reported as NETs rather than Lung and Pancreatic Cancer respectively, particularly at Grade 3.  This is great news.

However, it’s still a ‘quiet cancer‘ and there are probably hundreds of thousands out there still to be diagnosed.  There’s a whole invisible patient population out there somewhere. 

Neuroendocrine Cancer – shh! can you hear it? 

I didn’t hear it and was totally unprepared for my diagnostic experience, to the point that I initially ignored it.  I didn’t even feel ill!  But the doctors did find it because they had detective instincts. 

By the way, Neuroendocrine Cancer hates awareness so share with others!