“I’m only as good as my last scan”. I received this comment last week in response to one of my posts and 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 5HIAA are clearly useful 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).
Scans are also important at the diagnostic phase and I’m sure like myself, many people had their first ever scan at this point. 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 (i.e. a biopsy) and then hopefully, a proper diagnosis.
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!
The internet is full of blogs and articles about a subject which is described as ‘scanxiety‘ – the joining of the words ‘scan’ and ‘anxiety’. I also noted some authors using the words ‘scanxiety’ and ‘anxiety’ interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans. Not that we need separate names – at the end of the day, it’s just anxiety regardless of whether it is waiting on the results of a biopsy, blood test, urine test, or anything else related to an illness. No-one goes around saying ‘blood-testxiety’ or ‘biopsyxiety’. Why scans?
‘Scanxiety’ – I just don’t get it ……or more accurately I just don’t get overly anxious about having a scan or getting the results of a scan. Why? Because testing (scans in particular) is the one thing that’s going to keep me alive for as long as possible. I was diagnosed 8 years ago thanks to the trigger of precautionary tests including a scan. I now live with the knowledge (and I accept this fact) that there are still bits of cancer inside me. If I am not regularly tested, there is a chance I will eventually succumb to a serious or irreversible problem which should have been spotted earlier. Even in the event of ‘not so good news’ following a routine surveillance scan, I still see that as a positive because it means the surveillance regime has worked and an investigation can be commenced to more accurately localise and treat the problem. Even if you are in the diagnostic phase and a scan is ordered, you need to get right inside that machine and get it over and done with. It just might save your life.
The test results will be what the test results will be and personally I try to save any worry until I know if I have anything to worry about.
Many cancer patients are under surveillance for a long time and are tested regularly. As an incurable cancer patient myself, I sometimes feel like I’m in a perpetual state of testing. I suspect if I was to let anxiety get the better of me, that would simply lead to other complications I just don’t need. I’m not that insensitive to forget that some people do probably get anxious about actually climbing into a scanner, particularly if they are claustrophobic but that is already a recognised anxiety issue rather than so-called scanxiety. I also suspect people will be anxious about their relatives having scans, particularly the first diagnostic one, worse when young ones are involved and I totally get that. Anxiety (as opposed to so called scanxiety) is a pretty natural reaction. However, to control your fears, you need to face them and then try not to let your anxiety filter down to others. I think people naturally and automatically try to do that without thinking.
‘Scanxiety’ – I just don’t get it. As for the 51,600 search results on the internet, I just don’t get that either!
You may find my 7 tips for conquering fear useful – read here.
Thanks for reading
You may also enjoy my article “10 Questions to ask your Doctor” – click here.
It’s that time again, every 6 months I need some checks. I’ve done the specialist blood test (Chromogranin A – CgA) and the 24 hour urine (5HIAA) and am waiting on my CT scan appointment. It’s also time for my annual Echocardiogram. I then see my Consultant and he delivers the news. Happy days 🙂
I positively look forward to my tests and I cannot wait to get into that scanner! ‘Scanxiety’ isn’t in my dictionary. Why? Because testing is one thing that’s going to keep me alive for as long as possible. If I don’t get regularly tested, then one day I might just ‘keel over’ because something wasn’t spotted early enough. Even in the event of ‘not so good news’, I still see that as a positive because it means the testing is working and an investigation or further testing can be put into place to find the problem – and the sooner the better. Where’s that scanner, get me in it!
One of the most common posts on NET Cancer forum sites is to express personal concerns or worries about upcoming appointments or waiting on the test results. Thinking back to my own countless appointments either for testing, treatment or for receiving results, I appear to be consistently pragmatic in my approach.
The test results will be what the test results will be. Worrying about them is not going to change them!
Bring it on!
You may enjoy my article “Living with Neuroendocrine Cancer – 7 tips for conquering fear”. Read here