“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 and it emphasises the importance of scans in advanced metastatic cases or those early in their diagnosis.
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 incidental diagnosis. I note some people degrading the meaning of incidental diagnosis but they are way off beam. Many early diagnoses in NETs are incidental 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 situation, I was being investigated for iron deficiency anaemia and the scans discovered my metastatic NET. Thank god for that incidental 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
If you can see it you can detect it. If you can detect it, you can investigate it further
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Ronny
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Thanks for the reminder Ronny! I have scans coming up and I can go down the rabbit hole worrying. But they are part of my life now and I work to maintain a healthy attitude about them! You are an inspiration and resource for me on a daily basis. Here’s to mind management and embracing life with joy and enthusiasm! I love your spirit😊❤️👍 Thanks for being there. Cyndy Marks. Pittsburgh PA USA
best wishes
I had to have an MRI scan and was convinced I could not do it, as I am claustrophobic – but my husband was allowed in the room, and sat near me, just touching my foot – I closed my eyes and got through it – have had another since – no they are not nice, but you can do it!
This blog has been a godsend thankyou all I am not alone
thanks, stick with me.
Great post! I had my CT scan last week. THANK GOD i had positive results! I hope that yours were too! Keep fighting fellow Zebra! And NEVER stop smiling!
Ronny…..I am allergic to the contrast dye when getting the CT scan, always barfing while being scanned. I have tried anti nausea cancer drugs, full stomach, empty stomach….any suggestions
i’ve never heard of that Cheryl but a quick ‘google’ indicates there is plenty about it but not much about alternatives! Might be useful speaking to a radiologist but perhaps you have already done that? It is stress perhaps (rather than an allergy?) Rescue shot before scan? I’ll keep my eye open.
Thought about the stress, took adivan prior, no luck. Also luckily I am NED and have no syndrome. Got the primary first time. Thanks for you help, appreciate it.
Wishing you the best today. I have found after the first few anxious times with scans, that I much prefer scans to more invasive procedures, at least when you are finished with the scan…there have been no lingering problems (aside from waiting for results 😕) After my last scope for a second bile duct stent, I am finding it hard to even arrange for my next, overdue scope…before that I had tolerated the many times I have had GI scopes; now I am scared! 😥
Hope today is a good one for you Ronny, my thoughts are with you and yours as always xx
Such a true statement! Best of luck with your scan today, Ronnie!
2nd Ga68 at Iowa on the 31st…can’t wait. After a while, they all blend together. Sorry, slightly jaded after eight years of this stuff.
Good luck with the scan. I am the one that does not think it is a piece of cake. Petrified of the MRI. But, I did well with the CT & Gallium .
Only ever had one MRI, it isn’t an enjoyable experience 😅
Good luck with your scan later today!
All the best for today’s scan, I have my next CT on Wednesday🔬