Rising Ca 27.29 but NED
I’m so frustrated. My 5 year anniversary of my surgery etc is next week. Despite that I have been battling other issues, massive weight loss, biliary issues and my ca 27.29 is rising, in fact it’s higher now than it was in 2017 before surgery/chemo/rads etc.
I’ve had 5 Cat scans in 13 months. I’ve had an endoscopy/colonoscopy. I’ve had X-rays. I’ve had blood work.
I’m so frustrated and scared even though I am literally NED. I can’t help but think…they haven’t scanned my brain. That’s what got my mom. Brain Mets. She was diagnosed Stage V at age 52. I’ll be 52 Sunday.
It’s a complete mind BLEEP. How can I celebrate my 5 year victory when it feels so uncertain despite the multiple scans etc.
Thanks for reading.
Comments
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Don't celebrate it? It sounds like you've got enough stuff going on, there's no need to add "worrying about not feeling celebratory" to the pile.
Do you have a brain scan scheduled? Either way, a rising CA doesn't necessarily mean you have cancer, it's not a reliable diagnostic test.
I hope you figure out what's going on soon!0 -
So sorry that you lost your mom and now have the coincidence of being the same age to think about. As Parakeets said, tumor marker numbers are not conclusive regarding diagnoses. But, I would certainly ask for a brain MRI if these were my circumstances.
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No I don't have a scan scheduled right now. Our insurance is changing March 1st, all my Doc's etc are on the new one, but I have to put the brakes on for a few weeks because I can't schedule into March until I have more of the insurance details and they're not doing that until next week UGH. First up I need to have an MRCP for weird biliary issues they can't explain that's driven me to the Er twice in an ambulance where they scanned me and found...nothing..
They think it's VERY possible my ca 27.29 is related to the biliary issues but they can't even prove that. Scan, test, scan scan and everything is NOTHING...but it's never in a way that feels good because something IS wrong
KWIM? In my head it's cancer until they tell me it's something else. I can't rest on "We don't know what's going on but we don't think it's cancer" I had my very first Dexa scan yesterday because I was too heavy for the machine until this started. I have lost 110 lbs - without trying - so I guess out of all of this that was the nicest part. When people find out though they say Congratulations - How did you do it? Ummm? Wish I knew... LOL
Thank you so much for listening. It's been so long since I have come here. I should come more often to support others. It's so important.
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So it sounds like you have had CT scans and endoscopy and colonoscopy. An ERCP is what you need to investigate the bile duct. (I have had seven.) You could also see what a PET-CT shows compared to a CT. For some people (like me) tumor markers are accurate, and for some they are not.
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what was your CA27.29 result to warrent all these scans?
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