CA19-9 test - what's this for? pancreas or other?

Midnight_Butterfly

I got a call from a nurse to tell me that my CA19-9 markers were up. I asked her what it was and she admitted she wasn't sure, but also wasn't sure if my surgeon was following up (I had Ovarian Ca in 2005) or if my GP was supposed to, so she was making a courtesy call just in case.

I asked her what the normal range was and she told me 0-37 and mine was showing 94. I thanked her and advised I would speak to my surgeon tomorrow. I then did a search for the test and pancreatic cancer was the first thing on the list (and several items down).

I've had a lot of burning and cramping pain between the bottom of my ribcage and the top of my navel that has been increasing in frequency in the past six months. Yes, I did see someone about it sooner. They did coeliac studies, pancreas test etc. Potential gluten intolerance came back.

But[b] I was wondering: What else does CA19-9 test for? Sure, it's a cancer marker, but the stuff I've been reading seems to point mainly to pancreas or gall bladder. Or is it purely pancreas? And my next question: if the blood test is showing a higher than normal reading, if it is what it could be, then does that mean it's spread out of my pancreas and into the rest of me? [/b]

I had Ovarian when I was 27 and they caught it in time. I've never been through chemo or radio therapies as the cancer never spread beyond the ovarian cyst, but they removed my appendix as part of a laparotomy. It was showing dysplasia.

Maybe I'm a little pre-emptive and paranoid, but I want to know what I might be facing. I've just started training for a new job. Not the best of time to be feeling sick. I'm sure only further studies will show, but I have also been advised the gastroenterology side of our department is a bit backlogged. Once you've had cancer once, you tend to be a little more wary of abnormalities occurring later on.

brainman

Midnight_Butterfly, from what I remember, CA19-9 is only associated with Pancreatic Cancer. However, I have read about it a long time ago so I might be wrong. I do know that it is not a very reliable test to tell whether or not a person has Pancreatic Cancer. It is used manly to gauge how effective treatment is. That is, if you know you have Pancreatic Cancer and are being treated for it, CA19-9 is a valuable tool: going down good, going up not so good.

I certainly would take it seriously and go to my oncologist for further tests just to make sure. I cannot imagine how you must be feeling right about now Sad

. Keep us informed.

You are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Midnight_Butterfly

Thanks for your reply Brainman. I will let you know. From what I've been reading, pancreatic cancer is not a good one to get. Mind you, either was ovarian and I was lucky to sail through that. This, I'm not so sure about.

I'll be talking to my surgeon hopefully today.

brainman

I am hoping and praying that it is not Pancreatic Cancer too. Pancreatic Cancer can be one of the worse cancers in terms of successful treatment Sad

. It is very aggressive and needs to be treated very aggressively.

Just in case, I am going to move this topic to the Pancreatic Cancer forum. Maybe members there will have better information for you. I will leave a "ghost" here in the General Cancer Topics as well.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Midnight_Butterfly

Thanks Brainman. I wasn't sure if I should have posted in the Pancreas forum as wasn't sure if it was a specific test or not.

brainman

Yes, I do hope that it is not Pancreatic Cancer. Some one here might know more about elevated CA19-9 since it is associated with Pancreatic Cancer. Hopefully, you will know more tomorrow.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Midnight_Butterfly

I rang my surgeon and got his receptionist who advised he is currently out of town but will be back tomorrow. I'll HOPEFULLY know a little more then.

Midnight_Butterfly

I found some brief information on the blood test for CA 19-9 on Wiki. I thought someone else might find this link helpful if they end up in the same boat as me with only a portion of the information and it's killing them to know what their doctor has to say.

http://en.wikipedia.org/wiki/CA19.9

Note that this link also mentions "Other causes for elevated CA19-9 levels include Mirizzi's syndrome and other hepatobiliary diseases"

There is a link to a description for Mirizzi's syndrome on the linked page I've provided. I hope this link doesn't breach this forum's rules.

Midnight_Butterfly

I spoke to my surgeon today (the one that dealt with my ovarian cancer and performs regular checkups to make sure my body is behaving itself). He informed me that this test is not necessarily indicative of pancreatic cancer and that the elevated results could be due to an inflammation etc. He did say that I required another blood test to check the results and then if still up, (as the one before this last one was normal), he will then request a scan and also speak to the specialists who deal more with the gastro side of things (he's a gynaeonocologist so this is not his field of expertise). I like the fact he acknowledged this wasn't his field as many might not be so forthright in coming. He knows his own limitations and he is not scared to admit that to his patients. It gives me full confidence in his abilities.

So, when I get the new lab test form in the mail (probably next week), I'll get another test and will soon find out (hopefully) if it needs to be taken further.

I also told my surgeon that I am aware there is an extremely high mortality rate with this particular cancer and that it appears (if the markers are indicative of cancer) that it might be very early so therefore I am anxious to hurry up and find out what it is so to look at early treatment.

Midnight_Butterfly

Well good news so far: My repeat test result had me at 11 which is in the normal range. Two weeks ago it was at 94. Stuff knows what's going on, but that's good to see this has come down. I have emailed my surgeon and queried whether I should go for a hurry up via the private system or stay with the public health system. He has referred me to gastroenterology, but they do have a bit of a waiting list on the public system.

brainman

That is good news indeed! CA19-9 is really not a good indicator for Pancreatic Cancer. It is best used to follow the growth or death of known Pancreatic Cancers diagnosed using other methods.

Sorry that you have to wait on your public heath system. Waiting can be very hard.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Midnight_Butterfly

I may not have to wait via the public health system, but I will see what my surgeon recommends in regards to trying to find out what the trouble is/was. I have been feeling good for the past 2 weeks now.

Midnight_Butterfly

It's been 8 weeks since my last really bad bout of pain under my ribcage between that and my belly button. However, I have been noticing dull pain occasionally on my left side just below the rib and tonight a new pain (after a minor bout with burn/pain in my mid-section earlier today). I saw a gastroenterologist at the hospital last week and he ordered a barrage of blood tests. Apparently, they're going to order a CAT scan or MRI (most likely CAT) of my mid-section and also perform an endoscope.

while my last test result for the CA19-9 marker was good, I am still scared. It's not even fear of 'what if it is cancer', or if I need surgery. It's more a case of "i'm getting married next year and moving to another country to be with my beloved" and I guess I'm scared that may not happen if I'm ill. It's the future I worry about. I had a wee break tonight. I think the not knowing and knowing that abdomenal issues are hard to diagnose, that if it is serious - chances are they find out how serious it is when it's a little late in the piece. I got lucky last time. So yes, I may be over reacting and thinking it's worse than it is, but once you've had cancer once, you tend to pay attention more to abnormalities.

I'm due to see the doc about something seemingly unrelated. I've noticed progressively worsening knee pain (joint/ball) so I will no doubt get to discuss the results of the million vials of blood tests they did last week. I wasn't sure where to post. I'm just venting I guess. I've got a bright future with someone I love and we've been waiting a while already to be able to build a future together (we met on the net in 2006 and plan to marry next year) and I'm just scared this might be the thing that drags it out even further or makes it impossible. Maybe I'm just frustrated in general. Never thought I'd spill my proverbial guts like this on a public forum. I'm usually the one that tries to comfort other people that aren't doing so well.

brainman

M_B, I could not read your last post without getting tears in my eyes Sad

. Cancer really does suck. I very much hope that it does not interfere with your plans to marry and move.

Vent on M_B Smile

. You have the right and reasons to express your feelings here. After all, you have been a member longer than I have Smile

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Midnight_Butterfly

Hi Brainman,

Sorry I brought tears to your eyes. Of all people, it seems you have been through some really big stuff with C. Thank you for your response. I was just having a bad moment last night but it's that not knowing that tends to drag people down when their mind is left to wander into the unknown. Thanks again Smile

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