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I am new here, and think I have reached the end of the internet searching on this, and haven't found an answer. I have had numerous u/s over the past 3 years due to fibroid issues. Had a d/c in '09 because my lining was 16 mm(?) thick and there were numerous polyps. All those were removed and the results benign. However about 9 months later they were back. I have been on the 'watch and wait' approach since. My last u/s was last month and aside from my fibroid growing to 6.5 cm (it was 4cm in '09), and the polyps again, there was now fluid in my endometrium. I had one complex cyst on my ovary, which to be honest, I wasn't worried about as I am 40 and know (now) all about the 'functional' cysts. But the doc had me take a CA-125 test. That brings me here. The results came back at 215. I know that this tests has many false positives and that it can be elevated due to various things, inc fibroids, but how elevated? I found several things online that said that anything over 200 is rarely benign, and now I am freaking a bit. I had a ct scan and another u/s earlier this week and outside of my uterus, nothing was found remarkable -and there were also no more cysts on my ovaries. I am worried though that it could be uterine cancer? I have abnormal bleeding - I basically spot/bleed throughout the entire month, and have too much discharge to even think about. I have a consult this week, and will most likely get a hysterectomy, but I can't stop thinking that I have cancer somewhere lurking in my system now. Has anyone else had a really high CA-125 result, to find out it was nothing?? Sorry for rambling, and thanks for listening.
The discharge I had was kind of watery, like watered down cervical mucus, which I now know is a symptom of endo ca. I can't answer about the CA-125 and I don't know that much about fibroids. I do know that I had that nagging feeling for a couple of years before my diagnosis. It doesn't necessarily mean anything but I wish I had pushed my PCP more to find out what was causing my symptoms.
What does your doctor say about the test result? Is your consult with a gyn-oncologist?
The discharge changes, sometimes it is like the eggwhite -type mucus on steroids (there is so much, sorry if tmi), sometimes it has blood in it, sometimes not. But in addition, I leak urine constantly (small amounts) because of the pressure of the fibroid on my bladder. I wake up every morning to wet underwear, and can't tell if it is urine or discharge. The fluid in my endometrium along with the discharge, is what is concerning me about endo-ca, and then this test didnt help any. My appt is with my regular gyno, although for all I know he may refer me out to a onc/gyno. I just keep going back and forth, thinking on the one hand it is nothing, and then fearing the worst on the other. And my poor husband - he is trying to be as supportive as possible, but lost both is mother and grandmother to ovarian cancer, so from his perspective he wants me to have EVERYTHING removed, ovaries and all. I am hoping that they can save my ovaries, since the last us and ct showed they looked ok.
My CA 125 was 122, I did not have cancer. I had endometriosis and fibroids. I was followed for 6 months with ultra sounds. When I grew more fibroids and the cysts remained I had a TAH/BSO. I know that anything that causes inflammation can cause an increase in the CA 125. My oncologist actually said she wouldn't have tested my CA 125. My reg. gyno had ordered the test. It's very unreliable in women who are still menstruating.
Sis in law of mine <much older than you > had CA off the wall , hysterctomy showed very large tumor in uterus BENIGN , she is fine . Now on to leakage of urine vs discharge . Received good advice on this site a while back . If not contraindicated place tampon ,if panties dry in am NOT urine . good luck !!!
If the fibroid is causing so much pressure on your bladder, that's reason enough to get a hyster IMO, or at least get the fibroid removed. One thing to discuss with your doctor - they might be able to do a frozen slide while you're in surgery to see if there's cancer present. If there is, they might need to biopsy lymph nodes and if it's endo ca, ovaries would probably have to come out too. If the slide's not done during your hyster, and the pathology report comes back with cancer, you could end up needing a second surgery. (That's what happened to me.)
I am not an expert on any of this so don't go by what I said. It's just something to look into. I think it's a good idea to at least consult with a gyn-onc before you have surgery.
Thanks so much everyone. I just got back and he was able to do an endometrial biopsy in the office (the last time they couldn't do it - the pain was too much). He said he got a good sample, so now I just play the waiting game. Either way, I have decided I am having surgery - if it comes back benign, then I will have a partial, or a total if it comes back malignant.