“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!
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!
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.
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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! 😥
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🔬