Anyone had the CA-125 test for O C?

Roxie5739 · April 2012

I had my annual physical today mainly to get a referral for a mammogram so I can get that done before my FET (thanks to Giuliana!) and I told my reg Dr about the IVF etc and he recommended that in my regular blood panels he is doing that he will add the CA-125 test to it as it can help to detect early ovarian C.

Reading more on it now, it can actually give a lot of false positives so I was wondering if anyone has has this test done and what were your experiences.

Here is a link if you are unsure what I am referring to: https://ovariancancer.jhmi.edu/ca125qa.cfm#accuracy

Sophistikitty · April 2012

Just lurking from over at that IF board and I saw your post.

I discussed this with my GP who is very focused on women?s health issues, particularly female cancers. She suggested I get the test as a baseline before my first IVF so that we would have a marker for later on. She suggested getting the test yearly after a baseline was established. My first test came back abnormal but it turned out to be the result of a cyst. I re-took the test after it was established I was cyst free and the test came back just below normal. My doctor feels it is important to establish a baseline range in order to more accurately assist in future potential diagnoses.... I know this view is somewhat controversial but with all the conflicting information you read about IVF and cancer, I felt I really had nothing to lose by establishing a baseline.

Mrs.McIrish · April 2012

Raises hand! I am BRCA1+ (breast/OC gene) so I typically get a CA125 every 6 months. They aren't the best measurement as yes, they give false positives as you may have a raised level attributable to something else. Also, not all women with OC will show a high CA125 level or at least not until you are at a later stage. So, it isn't a great surveillance method but it is all there is sadly.

My gynecologist oncologist told me last year to not bother to do the CA 125 while I was on fertility drugs because they can cause false positives and would only cause more stress to me. She told me to resume them once I was done TTC. Of course she probably didn't grasp how long I would try to TTC or how unlikely it is for me to get PG..

Mine were always under 10 so far (knock on wood). Above 30 is concerning to the docs. I would take before you start any stim cycle (or prep for FET).

GL!

ETA: there is a girl on 3T who was having crazy pain all of a sudden that lasted for weeks. Turned out she had stage 3 OC. Her CA125 was over 900.

Sophistikitty · April 2012

I have not been tested for the gene, however I was told that if my base number doubled there would be cause for further investigation. My first test was 28.2 u/ml and my second test was 20.7 u/ml. The documentation I have says it was assayed using the ?DPC Immulite 2000? method. According to that method anything over 21 is abnormal.

I am sure you have both seen this but the below study was the one she referred me to regarding IVF and ovarian tumors...

https://humrep.oxfordjournals.org/content/early/2011/10/19/humrep.der322.full.pdf

Mrs.McIrish · April 2012

Sophistikitty:

I have not been tested for the gene, however I was told that if my base number doubled there would be cause for further investigation. My first test was 28.2 u/ml and my second test was 20.7 u/ml. The documentation I have says it was assayed using the ?DPC Immulite 2000? method. According to that method anything over 21 is abnormal.

I am sure you have both seen this but the below study was the one she referred me to regarding IVF and ovarian tumors...

https://humrep.oxfordjournals.org/content/early/2011/10/19/humrep.der322.full.pdf

The plan for me is to remove my ovaries once I am done TTC since I am at high risk even without IVF. After all the treatment I've had, I wouldn't dream of keeping the ovaries in there. It's just a question of when for me as I am not ready yet. I can remove the ovaries and still do DE in the future if I keep my ute but I'm still not ready to give up on my OE yet. But I know I am pushing the envelope here as I am 38 (39 in Aug) and my mom had OC at age 36.

Sophistikitty · April 2012

I am not high risk (as far as I know)... I guess I just have a hyper-vigilant GP!

Praying that #4 is the magic number for you!

Trippleb · May 2012

I haven't taken the test but before my first Lap I asked my RE about testing my CA-125. I had read that people with endometrosis can have raised CA-125 levels. I was hoping to rule out endo so I didn't need to do the lap. The RE agreed to test me but he felt pretty confident that I had endo and my levels would be elevated. In my case he felt the lap was necessary and knowing my CA-125 numbers before the procedure would only be alarming. Just wanted to through that out there so if your numbers come back elevated, it doesn't necessarily mean O C.

Roxie5739 · May 2012

Thanks ladies - all comments a huge help. I should get the results back tomorrow or Thursday so I will not freak unless the numbers come in like Pulga's did.

Anyone had the CA-125 test for O C?

Re: Anyone had the CA-125 test for O C?

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