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Elevated CA-125 Need Advice
kabro123 posted:
I am a 41-year old female who is otherwise very healthy. For about three weeks I've experienced a range of gynecological and gastric symptoms. A pelvic ultrasound revealed what appeared to be a ruptured ovarian cyst with fluid still leaking. A blood test showed an elevated CA-125 of 102. The blood test was the day of the ruptured cyst and mid menstrual cycle. I was referred to an oncologist who wants to schedule a laparoscopic procedure to test for ovarian cancer. I'm all for doing whatever it takes to ensure this is nothing serious. But wouldn't it make more sense to wait a couple weeks to take a follow-up CA-125 test to see if it's possible the cyst and menstruation contributed to the elevated level? I have also felt substantially better the past few days. I hate to have unnecessary surgery. Any feedback would be greatly appreciated.
Anon_6061 responded:
I'm glad you deferred on the laparoscopy. Ovarian cysts are common and are almost always benign and don't require any treatment. I personally was rushed into surgery for a suspicious looking cyst and my gyn removed all my organs. All that was wrong was the cyst which the frozen section showed to be benign! My health has suffered horribly since then.

The CA-125 isn't accurate in diagnosing ovarian cancer especially in pre-menopausal women. It's more accurate in post-meno women and as a tool for assessing the effectiveness of ovarian cancer treatment. Here are a couple of links about ovarian cysts and cancer -
This site says "CA-125 is a substance found on the surface of ovarian cancer cells and on some normal tissues. A high CA-125 level could be a sign of cancer or other conditions. The CA-125 test is not used alone to diagnose ovarian cancer. This test is approved by the Food and Drug Administration for monitoring a woman's response to ovarian cancer treatment and for detecting its return after treatment."

Ovarian cancer is rare. A woman's lifetime risk is less than 2%.
kabro123 replied to Anon_6061's response:
Anon, thanks for the feedback. I got a second opinion from a well respected Gyn in Newport Beach, Calif. She suggested re-running the CA-125 in case there had been an error. The second test revealed the numbers are coming down and are now 49.0 (still above norm, but not by much). I'm seeing an OB Gyn oncologist next month but the consensus seems to be watchful waiting. Boy am I frustrated that the first doc wanted to jump in and start doing surgery. I guess that's how they make their money.
Anon_6061 replied to kabro123's response:
Let us know how it goes - hopefully, all will be fine!
kabro123 replied to Anon_6061's response:
Went back to see the Gyn Oncologist in California again last week. She did a thorough exam and ran a third CA-125 test. It came back normal. The doc called me personally to tell me the good news and truly believes the whole thing can be explained by the ruptured cyst. I am soooo glad that I didn't jump into surgery. My summer was basically ruined with worrying, but at least my fall wasn't ruined by having unneeded surgery as well. Thanks again for all of your great advice. I hope others see this string of posts and realize that an elevated CA-125 can mean many things so don't worry until there's reason to worry.
Anon_6061 replied to kabro123's response:
I'm so glad to hear this! Too many women have had their organs needlessly removed even without an elevated CA-125. And those with an elevated CA-125 usually don't realize the high rate of false positives so end up in an operating room.

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