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Neuroendocrine Cancer – shh! Can you hear it?

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sshh - can you hear it?

shh! – can you hear it? I didn’t.

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!

Thanks for reading

Ronny

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11 Comments

  1. Jan guhl says:

    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!!!!!!!

    Liked by 1 person

  2. Patricia says:

    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….

    Liked by 1 person

  3. 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.

    Liked by 1 person

    • ronnyallan says:

      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.

      Like

  4. […] effects for many years before a correct diagnosis is made – I touched on this in my blog NET Cancer Diagnosis – how early is early? Since my diagnosis, I  seem to have been in a perpetual learning phase!  What not to do, what […]

    Like

  5. […] effects for many years before a correct diagnosis is made – I touched on this in my blog NET Cancer Diagnosis – how early is early? Since my diagnosis, I  seem to have been in a perpetual learning phase!  What not to do, what […]

    Like

  6. Coral says:

    Reblogged this on Beyond Life's Challenges and commented:
    Building awareness for this disease is important. Here is an article by a fellow “zebra” living in the UK that is well-worth the read.

    Like

  7. cy says:

    So right Ronnie. It took about six years for me to be correctly diagnosed and it was an accident then.

    Like

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