Neuroendocrine is not your average cancer but it can be pretty 'mean'

2 minute read time.

Most people have perceptions of cancer in their heads, fairly fixed perceptions too.  They think about all the stuff they see daily on TV, in the main press, and people they know.  The 'big cancers' set the scene.

Most doctors know about the big cancers.  They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy.  Many survivors will have side effects of their treatments, perhaps temporally losing all their hair.  More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status.


NET Cancer isn't really like that!  Whilst it has a reputation for being a generally slow-growing type of tumour, offers a good outlook/prognosis, has many different types of treatment modalities, it can frequently present or become incurable and offer some quality of life challenges.  For example:

  • Not many doctors know about it.
  • Many patients will have gone through extended diagnostic periods, perhaps months, years in some cases.  It can in many cases be 'silent'.
  • Only doctors who know a lot about it, really know how to quickly diagnose it. Only they know how to properly treat it.  It's a very individual disease, there are many factors involved.
  • Another key difference with NET Cancer is that many people will have an associated 'syndrome' and this might have been with them for some time before diagnosis.  The symptoms of these syndromes can sometimes be rather debilitating, even after treatment.
  • Many people will never be disease free nor will be they given a status of full remission.  Their surveillance (scans etc) could continue indefinitely.
  • Many people could be given treatment indefinitely, in particular, Somatostatin Analogues.
  • Many people will live with the consequences of this cancer for a long time and this plays on their mind as well as the effect on their body.

Neuroendocrine is not your average cancer but it can be pretty mean.  That could  explain why there are so many hardened NET Cancer warriors out there!

p.s. I look well but you should see my insides!


Thanks for reading


Ronny Allan


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