“I’m only as good as my last scan”. I once received this comment in response to one of my posts.  I thought it was a very pragmatic thing for someone to say.

A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5-HIAA are clearly useful (for me) but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story and a scan is normally the confirmation required whether it’s a CT, MRI or PET (etc). I suspect that was in the mind of the person making the comment. 

Scans are also important at the diagnostic phase and I’m sure like myself, many people had their first ever scan at this point.  Some of you (more than others may think) may have been investigated for something else and a NET was found – that is called an incidential diagnosis. I note some people degrading the meaning of incidential diagnosis but they are way off beam.  Many early diagnoses in NETs are incidential diagnoses and there would not have been any diagnoses without these chance findings. Moreover, some are found during an investigation for something else, later found to be related to NET.  Take my own sitatuion, I was being investigated for iron deficiency anemia and the scans discovered my metastatic NET. Thank god for that incidential diagnosis because it led to treatment for NET instead of me blundering on wondering what’s wrong with me! 

You can have many checks, investigations and tests but for most, the scan is normally the main test that is going to confirm the presence of tumours.  This then leads to further checks to confirm the staging and grading and then hopefully, a proper diagnosis.

So yes, in some ways you are only as good as your last scan. However, I’d like to think you’re still not alone.  You may have access to a NET specialist or nurse by telephone, you may rely on your GP/PCP as a sounding board for issues.  You may even rely on my patient group as an additional sounding board for your worries.  

I don’t mind scans, they are probably the test that is going to alert my team to anything odd going on.  Thus why I don’t mind doing them – in fact, they are a piece of cake!

Thanks for listening

Ronny