Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

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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!

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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.

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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!

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11 thoughts on “Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

  • Jan guhl

    Ronnie where would we all be without you. Keeping us up to date with your informative blogs. I have learnt so much from you and send you a big hug and an even bigger THANK YOU!!!!!!!

  • Patricia

    I went in for colovesulcula fistula repair,had two feet of lower intestine removed as well as appendix.. ( no tumor there.they weren’t suspecting any….however Surgeon decided to palpitate my liver, found rice size tumor,removed ,it was a carcinode tumor….had octriotide scan, found no others. Am post menopausal and have occasional hot flash.other than that doing great…glad tumor found, if anything pops up in future have a good base to proceed. Serendipity….

  • Amazingly Ronny it was a very high suspicion within three days and a definitive diagnosis in I think two weeks for me. However I live very close to Stanford Hospital in California where some of the world’s experts in this disease work. A suspicious GP (or the American equivalent thereof) in my local doctors office (who was actually standing in for my regular doctor) referred me to a surgeon at my local hospital, where I was sent for 3 days for tests. He in turn after consulted with a number of his local colleagues and got me an endoscopic biopsy looked at at Stanford, and I had an accurate diagnosis a few days later. One month and one Whipple procedure at the local hospital and here I am almost 9 years later.

    It’s never been lost on me however that I am almost certainly alive and well due to an accidental consequence of the location at which I live. From diagnosis, to treatment, to ongoing monitoring and care I have interacted with people who know what this disease is and what the latest in treatment options are. Over the years I’ve realized how incredibly lucky I am and how if everyone else had access to this level of care and expertise the outcome for them as individuals would almost certainly be massively improved.

    Therefore the awareness you push for is critical. Awareness will lead to diagnosis, access to treatment, better outcomes and maybe one day a cure.

    • Great story Paul which I believe is more common than people think (you only hear about the worst cases in media, forums and awareness messages). Technically I was 6 weeks flash to bang but I’m highly suspicious that a colonoscopy 21 months prior to diagnosis was probably the starting point. Thanks for your support here and on twitter.

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