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what is considered a high c 125 level?
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what is considered a high c 125 level?

Hello Ladies,

I am 23 and was diagnosed with an ovarian cyst yesterday.  It is 9 inches in diameter and my c 125 level is 56.  My doctor is telling me normal levels is 0-26 or something like that but after reading some of your posts 56 doesn't seem that high.  Does anyone of any expereince with high levels of c 125 but not necessarily having cancer?  It seems like the chances that this cyst being cancer is quite rare, but my doctors seem really concerned and have scheduled me for surgary early next week where they will preform a frozen biopsy mid-procedure and then I guess go from there.  Ladies...what questions do I need to ask my doctors?  Are any of you aware of any other tests that can be preformed to check for cancer?  I am pretty blindsighted by all of this...I had no symptoms to speak of (which seems to concern my doctors even more)rather then maybe some occasional bloating.  I am pretty scared and so any advice would be much appreciated.  :)
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6 Comments
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140437_tn?1215113342
A normal ca125 is less than 35. My ca125 was 47 I am still waiting for the pathology on the cyst - removed 2 weeks ago! (It looked ok but till I get that paper that says b9 I am in limbo)Apart from telling everyone I am ok this is my first post since surgery been feeling very depressed (sorry chick this post seems to have suddenly become about me lol) No dont worry about ca125 it is no use as a diagnostic tool as there are false positives and negatives and many things can elevate ca125. Hopkins dont even do the test anymore pre surgery and they have even raised the normative value to 65.

Anna x
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135691_tn?1271100723
I totally understand your fears. I was 26 last year when I was admitted to the hospital for pains in my bladder - they discovered, after a CT scan, that I had several tumors throught my pelvis. My biopsy came back as borderline tumors (after many different results) and my CA125 was 46. It was only during surgery and a frozen section, that I was diagnosed with stage IIIc Ovarian Cancer. My oncologist says normal levels are 35 and under, but it's not a tool used to diagnose cancer. (obviously 46 is very low - this would have suggested that it was not cancer). You are so young, as am I, but it is possible. I'm not intending to scare you, but I want you to be prepared - all throughout my various meetings with Dr's and pathologists, they all told me they were sure this wasn't cancer, that I was too young and had no family history. Well it was, and I was blindsided - gather as much information as possible now, so if it comes to that you will feel prepared. The CA125 test is really not accurate in premenopausal women either, so don't put to much stock in that number - many other benign conditions can cause it to rise. Anymore questions, please ask - I wish I had found this website prior to my surgery!
Becky
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Avatar_n_tn
Hi I am getting my left ovary taken out August 17 it has a tumor inside the ovary the doc said my CA125 levels were 92 he said I have fibroids on my uterus sometimes it can read a false positive, to say the least I am afraid I may have cancer and what stage is it? For the past 2 years I kept having a cyst grow and shrink on the same ovary then this past Dec. the doc said it shrank enough to where I did not need an operation now 2 months ago I felt pressure again got a sono they said it is a tumor . I had a MRI done I saw the doc this Tuesday he said the tumor is in my ovary I have toget it out, I have alot of the symptoms for ovarian cancer, I am afraid what if it is cancer the past 2 years what stage am I in when it kept growing and shrinking . Anyone who had a laparodomy is it painful after the operation? How long does it take to get a biopsy result?
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Avatar_n_tn
I am almost two weeks post laparotomy (my third!).  This time they took out the old scar which was causing the problems and left me with a scar from belly button to pubic bone.  I had a bit of a tummy tuck thrown in as well!

My scar is healing nicely and looks way better than the old one.

Yes there is pain but this will pass.  Spend time pottering about doing nothing but posting on this site, lying in bed and yes watching DVD's - just watched Fried Green Tomatoes - finally dried my eyes.

I wish you the very best in whatever decision you come to.  Good luck.

xx
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Avatar_n_tn
Thanks everyone,

I am so glad I found this message board.  Isn't it a weird feeling...almost dreamlike or more nightmare.  I have never had stitches or been cut open or anything and now all of the sudden I may wake up with nothing left in me (worst case scenerio...of course).  Thanks for all of your responses.  I am flying home to my parents tomorrow and have a pre-op scheduled for Mon.  I am sure as the weekend continues and with no doctor to call I will be asking a million questions :) Thanks again...

Dee

PS.  I am curious about the scars from the surgary.  My doctor said they may make an incision from my pubic bone to my belly button vertically or more of a c-section cut...what has been your experiences with the healing time and the actual cut???
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Avatar_n_tn
Anything over a 35 is elevated.  I had a 12 x 11 cm complex ovarian mass and a CA-125 of 130.  It turned out I had an endometriosis cyst.
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