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CA-125 Call back -- Scared

JWG
Six weeks ago my wife (33 yrs old) had a CA-125 test (at her insistence).  Results came back slighlty elevated at 27.  TVUS revelated multiple cysts on both ovaries, but nothing overly suspicious.  Tuesday of this week (month since first set of exams), she had repeated TVUS and repeat CA-125.  TVUS showed one of her ovaries was smaller than on first test (shrinking cyst?) but otherwise no worrisome changes. However, doc called next day with repeat CA-125 results, and they have jumpted from inital 27 to 66.  My wife has a long history of cysts (dermoid -- large -- removed in '99 as benign, with normal CA-125) as well as (so far) very mild recurrent dysplasia.  She's also had a benign breast cyst (she is very cysty! <g>).  She also has a very long history of IBS and colitis.  Given her otherwise "benign appearing" ultrasounds, I am still very concered about the rising CA-125.  We see the doc again next week for a consult -- not sure what he is going to suggest, but I'm assuming some type of surgery.  Scary...and confusing.
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Avatar universal

Hi,
Please don't worry overly much about your wife's CA-125 at this point. As you say, she is a 'cysty' type of girl, and her other tests indicate there's nothing seriously wrong. CA-125 levels are not that reliable as a diagnostic tool for OVCA, especially in someone as young as your wife. According to my surgeon and many of the ladies on this site, it is better used for post-menopausal women, and/or to track improvement after chemotherapy. Furthermore, CA-125 levels can rise in response to a variety of different factors, not all of them dire. Finally, your wife's reading is not alarming at all -- I had a reading of 29,5, and had a benign cystadenoma that was removed without complications 6 weeks ago.
Hope this helps calm the tummy flutters a bit.
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Avatar universal
JWG
First off, thank you very much for your comments and quick reply!  This discussion forum seems to be full of some truly kind and helpful individuals (yourself included).  So, my sincere thanks.  As always, the waiting is the hardest part and while my wife (and me ) have calmed down a bit since yesterday, I think the "jump" in the CA-125 level is what has scared us the most.  I know that post-diagnosis/during chemo these levels will drastically change, but I have yet to find anything to suggest a "normal range of fluctuation" in women like my wife who (we hope!) have a benign condition that is theoretically causing the levels to increase.  Then again, we are only working off a month's worth of data -- I wonder if her levels may have been fluctuating for some time (or rising for that matter)?
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Avatar universal

Yes, CA-125 levels can fluctuate even in the absence of chemo since they can be influenced by a variety of different factors. Please don't worry more than you need to, be calm for your wife's sake, and reassure her as much as you can. Many people here are reading your posts, and others will be along shortly to offer you their wisdom and affection.
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135691 tn?1271097123
Hi there... I was just doing some research and found that a rise in CA 125 can also be affected by colitis. If you go and google CA 125 and colitis, you'll see some different articles come up. I can imagaine your wifes (and your) anxiety at this point, but there are still so many unknowns. Try not to worry until you get some more concrete answers. (I know... so much easier said than done!) Maybe a rise in her number is indicative of something gastro-intestinal - which, could very well be a blessing in disguise!
Becky
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Avatar universal
JWG
Thank you everyone -- your responses are truly helpful!  I spoke to my wife a short while ago, and she is sounding more confident.  She has suffered from IBS and severe migraines for so long, that I think (perhaps rightly so) she is viewing this as a "blessing in disguise" and perhaps a way of finally getting her on the right path to treatment.  Or, if this does turn out to be OC, it will be a truly amazing chance that she insisted on the CA-125 to begin with.  I realize it is not a good screening tool, and am starting to think (thanks to all of you) that this is a benign situation we are dealing wtih, but if...IF...it is not, then the CA-125 might have saved my wife's life.  Scary...but a "good scary" I suppose.  Thanks again to this wonderful support forum.
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Avatar universal
I agree with the other ladies' responses. Ca125 is unreliable for premenopausal women. LOTS of things can give false results. Has she ever been on the pill? I was told that being on the pill for some time reduces your chances  of ovarian cancer. It is good of you to check with us because more than likely there is someone who has been in your shoes. Please check back with us and have your wife come too!
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Avatar universal
JWG
Yes, she was on the pill for many years but had a uterine ablation and tubal ligation in 2002 and 2003, respectively.  Somewhat of an "update":  My wife called her GI doc today who last aw her in (I think) 2004 for a colonoscopy for her IBS (normal results then) and told him about her CA-125 levels and situation.  They want to see her next week, too, and were concered about the rise in CA-125 from 27 to 66.  Given the two recent TVUS that have shown (apparently) benign ovarian cysts, I am more concerned (and I think my wife is, too) that this could be related to something gastro-intestinal.  Has anyone ever seen a direct correlation between a high (well, 66) CA-125 and IBS/colitis/otherwise benign GI condition?  I know ultrasounds aren't always perfect, but the GYN was pretty confident that the ovarian cysts that are showing up are benign.  I thought I read somewhere where CA-125 can also indicate other cancers, but is most prevalent in ovarian cancers (when that is in fact the case)?
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Avatar universal
JWG
BTW, LitDoc, in your original post were you wrote, "I had a reading of 29,5," did you mean 295?  If so -- and given your subsequent response -- that is indeed encouraging to hear!
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