High marker CA 19-9 referred for scan..

[KillashandraRee]

Went to the doctors on Thursday with what I thought was indigestion or similar and after blood tests yesterday I was called back in this morning as my CA 19-9 marker is high which is a possible marker for pancreatic cancer.
I'm 42 (just this Saturday) and healthy. I have two young boys 4.5 and 7 and I'm reeling. I've always thought of pancreatic cancer as a death sentence. Can't quite process it all really.
I've got to have a scan (and it's completely possible its something simple and nothing to do with the big C) and my husband has moved heaven and earth to get me one tomorrow rather than waiting for 4 weeks.
Has anyone else experience of this? Not sure what I want really maybe just a hand hold.

Hand holding never assume the worst, bloods can be raised for lots of reasons

Thanks Lemington. Scared myself silly looking at survival rates for pancreatic cancer. Trying not to jump too many steps ahead. X

Completely normal (and I would do the same!) but only focus on what you actually know, not on what your brain is thinking it might know!

I have my Ca19 checked every year as part of the monitoring for recurrence of an ovarian tumour - not cancer. The first time I had it done it was 51, then 47, now 46. I was referred to Gastro, because of some protocol that 3 above ave levels needed further investigation.

I Googled it and the first thing I read was that it wasn't reliable to diagnose cancer. It's more useful to check whether chemo is working. The consultant told me that my levels weren't that high and could be my normal. Some people have scores up in the thousands. To be sure, I had 3 CT scans, pelvic, abdominal and chest - which were all clear.

I don't know how high your level was, but I think if they were really worried you'd be on the 2 week pathway. They're just being careful. Once you test for something, you're almost obliged to do something when the result is higher than normal, or why do the blood test in the first place?

But the waiting to know is dreadful. Just take it one day at a time and try not to get ahead of yourself. Easier to say than do, I know. Fingers crossed all will be well and you'll have had a very thorough check-up.

CA 19-9 is not usually used as a diagnostic test because its positive predictive value is poor. If you tested a population of people without any symptoms, you would only find 4 with pancreatic cancer for every 1000 that had a raised CA 19-9. This number will be higher amongst a population with symptoms but still quite low.

It might be something important but there are lots of benign causes as well. I hope you can get the results of the scan quickly.

Thank you for your replies. Good to hear it's not a certain outcome. It's hard not to worry. Pancreatic cancer killed my grandpa and it's been the thing my mum has always drummed into me that you can't survive. I'm trying not to panic but I can't help thinking through the possible outcomes tomorrow. My whole life could be about to change, or it could be nothing.

Trying to sleep but I can't. Trying not to google pc (it's pretty bleak) ugh roll on 6am

Wishing you all good luck for your scan OP. Remember - the odds are in your favour.

Thanks TwitterQueen.

Saw a consultant this morning who did the ultrasound and he seemed happy with what he found. Now back to the GP to see if that's enough to satisfy or if there's anything else we need to look at. Big relief that there was nothing obvious.

Now waiting for another blood test to see if it could be ovarian and to have an endoscopy to check out what's going on in my stomach. Hate the waiting it's going to be weeks before they can figure out what's going on and my imagination keeps getting the better of me.

CA125 is the marker for ovarian cancer OP, AS WELL AS OTHER THINGS THAT AREN'T CANCER. You shouldn't have to wait weeks for a blood test (though I had to wait 10 days...) and if it's raised your doctor should tell you within a day or so. Do you have any other symptoms? Did they check this marker when they did they first bloods for CA19? Might be worth checking that to save you worrying unnecessarily...

If the blood test is Ca 125, I'm afraid that's not much use for diagnosis either, unless the levels are really high, up in the hundreds or thousands. So don't be too alarmed by the result. Mine was 5 X normal, caused by the very large tumour rubbing against other organs.

An ultra-sound would be more useful. Ovarian problems do sometimes cause gastric issues because there's a knock-on effect on organs higher up, so it's good to rule them out. 'Ruling things out' is what most tests are about at this stage and medics always seem to start with worst-case scenarios. It doesn't mean that they actually think you've got whatever they're testing for.

Deep breaths, distraction and stay away from Dr Google.

Sorry TQ - cross-posted. 3 cheers for the capitals. I know that these tests are useful for some patients post-diagnosis, but, boy, do they cause a lot of unnecessary anxiety.

Thank you both

I've the blood test tomorrow for the 125 marker. They didn't test for it before as the pain is in my upper abdomen. And when we went for the ultrasound they only did the upper abdomen. (I wish I'd asked them to just swish all around to check everywhere )

My doctor is away for a week so I'll get the blood test results next week and the endoscopy probably after Christmas.

It's hard as I feel like some sort of drama queen/ and feel guilty about all these tests when I feel fit as a fiddle (apart from the stomach thing which feels like bad indigestion). My husband keeps reminding me that I haven't made up the 19-9 marker result but I do feel at turns a bit like a time waster and then I feel worried that there is something serious and glad they are doing al the tests. It's such a confusing mix of emotions and very tiring thinking about it all.

I've my husbands 40th to organise though and Christmas as well as a crazy workload so as long as I keep of google I should be ok.

I really appreciate you both taking the time to answer me thank you.