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

Thousand of people are diagnosed with cancer every day.  Many types of cancer have big patient populations due to the prevalence of diagnoses. They are so common that billions have been ploughed into research and care services.  Doctors are used to seeing lots of these patients and they have tried and tested treatments and care protocols. Many will come out of their treatments and under surveillance for a period (normally 5 years) and then declared in remission.


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.

However, Neuroendocrine Cancer 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. In addition, the scenario I outlined above is far from being a normal experience for a Neuroendocrine Cancer patient.

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.  And then there is the  thousands and thousands of ‘undiagnosed’ either stuck in the diagnostic system or not yet aware they have NETs.

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.

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’.

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

 

 

Author: Ronny Allan

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5 thoughts on “There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient”

  1. 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.

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

    Ingrid

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