increased CA125 but not CA 15-3

fullofbeans · 01-10-2010, 01:47 PM

Firstly happy 2010 to all and may we all fare well this year.

My tumour marker is for the first time over for the normal 35 i.e it is 46 for CA125 but not for the CA 15-3 i.e 14

Has anyone ever had false positive???? I think that the CA125 can be unreliable particularly for pre menauposal females but has it has been normal for 3 years..

I was increased when I was diagnosed but became normal ever since I was NED.

I am a bit anxious about it when I think about it, which I am trying to put aside..

I guess I just wanted to tell someone to because I do not want to worry friends and family until I get the next tumour marker results and see what it says.. that is it crying now..so fed up with the uncertainty..

Ellie F · 01-10-2010, 02:24 PM

Hi
Have no words of wisdom for you but hopefully this will be just a blip. I think you have done well to get your onc to check these here in England as mine refused on the basis that he felt they were unreliable! When will they repeat the test?
Ellie

fullofbeans · 01-10-2010, 02:55 PM

Hi Ellie, sorry to hear, or perhaps it is because my tumour markers have followed the tumour mass so well during treatment .. that said my onco beleive in their usefulness when these were elevated when tumour was there. I guess if result were negative when you had tumour it would be useless to have them checked.

Cal-Gal · 01-10-2010, 06:54 PM

Hello full of beans--

So sorry you are dealing with this--

I too didnt tell anyone but the guys and gals on this board when they started going up--for fear my relatives and friends would think I was nuts!!!

I don't have any answers right now--but having my 1st PET this Tuesday since completing chemo--1/2 way done w/ Herceptin-- will have results Friday--my tumor markers were down after chemo and first few months of H--

BUT have been going mostly up--but still within range last few months--feeling crummy too--

I can repost if my rising markers are consistent w/any findings on PET this week on Friday---but boy I sure HOPE NOT!!!

Good Luck---

Paty · 01-10-2010, 07:45 PM

Hi full of beans,

I do not think you should worry till you talk to your doctor to see what further studies he/she recommends. Ca-125 is not a 100% reliable test and there are many factors that intervene to give you a false positive. Since this is a test for ovarian cancer, you may need to get other studies to determine what is your real status. Recommendations suggest to see a ginecologist-oncologist for an opinion, but before that see what your doctor recommends. I do not think that you should worry too much, but any way, check it as soon as you can.

Cannon · 01-10-2010, 08:07 PM

CA-125 is very non-specific - just indicates inflammation in the abdomen somewhere - check it out, but may be completely unrelated.
"A number of benign conditions can cause elevations of the CA 125 level, including pregnancy, endometriosis, uterine fibroids (benign tumors), pancreatitis, normal menstruation, pelvic inflammatory disease, and liver disease. Benign tumors or cysts of the ovaries can also cause an abnormal test result. Increases can also be seen in cancers other than ovarian cancer, including malignancies of the uterine tubes, endometrium, lung, breast, pancreas, and gastrointestinal tract." (medicinenet.com)

Lien · 01-11-2010, 12:43 AM

I too was told that these markers can become elevated by infections. You could have a low grade infection without noticing it, which could cause those markers to rise. I know the waiting game is terrible, but it seems to me that it's quite likely to be false positive. Have the other stuff checked, though. See a gyn. That may set your mind at rest.

In the mean time:I have a trick that may help: Allow yourself to obsess about this 15 - 20 minutes each day at a specific time. When the fears pop up during the day, tell them to wait for their allotted time & go do something you enjoy. That way it won't take over your life. This may not work all the time, but even if it works for a while, the burden of fear will be diminished.

Hang in there!

Hugs

Jacqueline

Ellie F · 01-11-2010, 04:27 AM

Hi Lien
That's a really good tip. I have been trying to have a 20 minute 'worry' time then put it to the back of my mind. It takes quite a bit of discipline but calms the anxiety down.
Ellie

Lien · 01-11-2010, 05:18 AM

Glad to hear it works for you! It worked for me too.

Love

Jacqueline

fullofbeans · 01-11-2010, 03:17 PM

well I am obviously in my obssessing time right now, thanks all I will keep you posted.

Lien · 01-11-2010, 03:58 PM

And how long did it last? ;-))) (the obsessing time, I mean)

Love

Jacqueline

fullofbeans · 01-12-2010, 08:04 AM

obssessing time..well long enough to add another vit to my list of intake :-)

Phoned today the last marker showed that it had gone back to normal phew..phew phew..pheeeeewwwww

That said I realised looking at my blood work that since chemo I have had a chronic low red blood cell count and chronic low lymphocite and low creatinine too..ever since my 2006 chemo treatment and it never went back to what it was. the low rbc must explained why I fainted last november and have been really cold and unable to warm up ... I think I'll post this one for advice soon.

Lien · 01-12-2010, 08:13 AM

Wow! Great News! And thanks for sharing it. We suffer most from the suffering we fear.

Now on to get thos blood counts up!

Hugs

Jacqueline

fullofbeans · 01-12-2010, 08:22 AM

Thank you!!!!

but no I would not agree in this instance, I would suffer infinitely more from actual bad news.. but I agree that I see much suffering from stress and sometimes I still let myself taken by it too.. worrying when the odds are against you (I am stage 4) is natural tho scientific even..:-)

Lien · 01-12-2010, 08:32 AM

You are right ofcourse; your fears are not at all unfounded. On the contrary. The odds are against you, for now. But it would be nice if more of the time you have now would be free of fear and worry. That's what I meant to say: if we manage to push the fears and anxiety back, we have better quality of life. It's not easy, though.

I have severe, quite debilitating sometimes, food allergies. I can obsess about something I may or may not have ingested accidentally. Some of my reactions are delayed up to 24 hrs. I sometimes spend those hours fearing the headache, migraine, stomach-ache, that never happens.

Hope you will be dancing with NED until a cure is found. Wouldn't that be wonderful and strange at the same time?

Love

Jacqueline

fullofbeans · 01-12-2010, 08:51 AM

It would be indeed be wonderful to have access to the cure, when I say the word "cure" my heart just lighten simply hearing that word.

But I can assure you that despite odds I am most of the time simply not thinking about it at all. but yep when I am afraid or something or feel something it doe take over and hurt..

Some people prefer not to have their tumour markers done nor scan. I personally live better knowing.

fullofbeans · 01-12-2010, 08:54 AM

Also sorry to hear about you food allergy, that must be really restricting to be that sensitive, an attack on your freedom I suppose.

Lien · 01-12-2010, 09:57 AM

It's doable, but sometimes I feel like I'm getting the flu for days or weeks on end. I hate that. Most of the time I do ok and now that it's freezing here in the Netherlands, I feel much better. Fewer airborne allergens make me less sensitive to foods. Fortunately I like to cook and have become very creative. Make everything from scratch, so it's very healthy too.

I can see how those scans and tests can set your mind at ease. Until the next one. But it beats never knowing where you stand. I would go for the tests too, I think, if I were stage IV.

Love

Jacqueline