Home » Awareness » There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient


Thousand of people are diagnosed with cancer every day.  Neuroendocrine Cancer now forms an increasing number of these diagnoses thanks to greater awareness, better diagnostic tools and more accurate reporting systems, including the ability to get the correct cancer type into the statistics.  However, although numbers are on the increase, it doesn’t necessarily directly relate to a better diagnostic experience – that is clear from the third reason I outlined above. Many people are still diagnosed too late.

To determine a cancer, that means getting tested and tests are normally based on the presenting symptoms. Certain cancers have very distinguishing symptoms and can in most cases, be correctly referred to an appropriate test, specialist or hospital. Tick!

The problem with certain cancer symptoms is that they are not always clear cut.  For example, take symptoms such as abdominal pain, diarrhea, weight loss, or fatigue – those can be caused by a whole host of things, many of which aren’t even cancer. It’s difficult for any doctor to work out the cause of such things let alone which tests to send them for – they can be really difficult boxes to tick. Worrying they can also be really easy boxes to tick for illnesses such as IBS, indigestion, menopause.

Neuroendocrine Tumours or NETs for short, is one of a number of ‘hard to detect’ cancers because many patients present with one or more of these vague symptoms.  It’s also one of the reasons why they are normally found at secondary care institutions and perhaps after several visits to a physician involving journeys back and forth between primary and secondary care before the diagnosis was finally made.  In the UK, it’s staggering to note that almost a quarter of all cancer diagnoses are made in an ’emergency scenario’, frequently when it’s too late to cure.

So what can be done to improve the diagnoses of ‘hard to detect’ cancers such as NETs? I don’t have any real answers for you although I have postulated a number of times about where we might focus in terms of education (more on this in later blogs).

I’m fairly certain that medical science will come along with novel ways of helping but that is somewhat downstream.  If only a referral to a specialist could actually be a referral to a team of different but highly coordinated specialists – a bit like a Multi Disciplinary Team (like a ‘Tumor Board’) but operating at the pre-diagnostic phase with quick access to all the regular diagnostic tools without any further referrals. That would surely help cut down some of the ‘ping-pong’ visits between primary and secondary care and a team of experts is more likely to ‘think outside the box’ than a single specialist who is focused only his or her ‘speciality’.

I was therefore very interested to read about a pilot programme currently underway in UK whereby a number of ‘early diagnosis’ projects are running.  The initiative is known as Accelerate, Coordinate, Evaluate (ACE) Programme.  Of particular interest to NETs and other hard to detect cancers is ‘Wave 2’ of the programme where someone with ‘vague’ symptoms is referred to a “Multi-Disciplinary Centre (MDC) rather than to a specialist in their local hospital.  And I thought ……what a great idea!  I’ll be monitoring this programme to see the outcomes which are expected at the end of 2018.

In the meantime, if you see someone ticking a box, make sure you know which box is being ticked and challenge it if necessary

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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5 Comments

  1. La'sbabies says:

    Thank you so much! Right now they’re trying to find a Pheo or NET for me. My life came to a screeching halt 4 months ago and I’m on 6 BP/heart meds and others. Prayers for all in the search.

    Like

  2. Pam McKinnis says:

    Yes, and the worst part is any time any little ache or pain occurs it makes you wonder if there is something new brewing!!

    Liked by 1 person

  3. Ingjerd O. Stewart says:

    Thanks for sharing your experiences with NET and all the info you gather for patients and caregivers. Really!! Keep it up!

    Ingrid

    Liked by 1 person

  4. Greta stifel says:

    Awesome information Ronny Allen

    Liked by 1 person

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