Topic: HELP!!

Hello clever clued up people!
OK, I am back in Greece. I went to the hospital today to pick up some of my Mum's notes. Well, I have now, in my possession, a number of CT scans, and a letter from Mum's surgeon, explaining what went on last year.
I think I have already said in another post, that she is returning to UK with me this Sunday.
ANYWAY, he also gave me a piece of paper, with the following info on it..........
AFP  1.60 ng/ml
CA 19-9  -1065.0 U/ml
CEA  2.90 ng/ml

He specified that the CA 19 was, as he put it, SKY HIGH. He said the CEA was about normal.
Unfortunately, his English is limited, so I didn't want to try and get explanations out of him. I can wait to ask my Doctor when I get home, but in the meantime wanted to know if any of you understand this??!!
Apparently he ruled out surgery, as she has MULTIPLE lesions on her liver.
Replies would be appreciated!

Re: HELP!!

Hi Kate,  CA19-9 is a blood test used to sorta monitor the activity of cancer usually when it's high it means active/larger tumor going on.  If it's low then less tumor activity is going on.  No change to the count can mean posssible stable condition.  I also remember researching that CA19-9 should not be used as a diagnostic tool,that other( benign) diseases can also elevate the levels.  Basically, if a CA19-9 is given upon initial DX they use that as a base line and test after that gives the doc a general idea of how agggressive or no -aggressive the cancer is.  The doc's call this a tumor marker.  In my case mine was slightly elevated and if I remember right the next step was ultrasound of my organs, then CT, then,MRI and then surgery.  So, I don't know if I explained this well enough.  Bottom line is CA19-9 In my opinion needs to be confirmed by way of CT.  That is why quarterly CT monitoring is the way I go.  It is a useful tool for monitoring and generally verify activity is still going on or not once diagnosed.  It's like other blood test it gives you a pretty good indication of where or what to look for next.  Although, there is some test that can be used for specific diagnostics. 
Glad to hear you and Your Mom are headed back to the UK.  Wish you both continued strength.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: HELP!!

Jeff said the same things I've been told.  The understanding I have from my doctors is that blood tests for CC really don't tell that much, and that CT scans are your best bet.  They routinely do tumor markers for me, but it is the CT scans that I see and really tell if the tumors are increasing, stable or decreasing.

I'm not in the complex medical field, but this is my understanding.

Jerry

Re: HELP!!

Thankyou friends!
I was just wondering if this would say anymore than I already know.
As it is, I know a bit more now. I'm back in Greece now, due to return home to UK with Mum Sunday.
I left her yesterday, to travel to the mainland, back to the hospital, to pick up any notes/stuff that I can take back to UK.
Well, the Doc gave me a brief covering letter, a piece of paper with the aforementioned CA etc stuff, and a pile of her latest (2 weeks ago) CT scans.
I asked him why he wasn't considering surgery again, and he said it's because she has MULTIPLE lesions to her liver. Yes, there is a huge one, 10cm. But there are others too.
So, he said chemo is the only option.
I will take all the stuff back to UK, and see if we can't get a second opinion, but to be honest, it doesn't sound good.
When I asked her if (before I heard the MULTIPLE word), if she would consider surgery again if it were an option in UK, she said she isn't keen to go through all that again. And she is also not keen on the idea of chemo. If it were going to cure her, she said she would give it a go, but as it isn't likely to do much at all, she says she doesn't want to have a potentially nasty treatment.
I tend to see her point. What is it likely to do?
The thing is, my Mum has had a good life, and see's no point in having any treatment, if it isn't going to cure her. She wants what time she has left, to be as pleasent and easy as possible. Unfortunately, if she stays here in Greece, she will most likely end up in hospital, where she would die. She wants to come back to UK, so that she will have access to decent palliative care.
She is looking forward to English supermarkets/food, and English TV, and some home comforts!! Her life is very basic in her caravan. No running hot water. No flushing toilet. A 2 ring cooker. I think it will just get more and more difficult for her here, and she will not have the services available that we have in UK.
Having said all this, I will urge her to get a second opinion when we return home. But I must also respect HER wishes! I might want to grab at any available option, because I don't want her to die. But given the fact that she is happy to let go, who am I to try and talk her into anything that may reduce the quality of what time she has left?
I'm just glad that she has decided, for herself, that she wants to return to UK, and that I can be there for her, and can share whatever time she has left.
Just wish it hadn't come back quite so bloody soon.

Re: HELP!!

Have you heard of the Bristol Cancer Centre? They are a centre for complementary approaches to cancer care. My husband and I went there and found it very uplifting.
Patricia