ca125 accuracy

[urbangal]

Hi again,
Just wondering(survey sort of!) how many of you that were diagnosed with ovca had elevated ca125 tests and were told
you had a good chance of it being ovca before your diagnosis? Did they more or less know ? I guess I want to know if the present diagnostic tests are usually right on or mostly not.
Obviously I know there is no absolute way until surgery to know but was interested to see if they were right most of the time(by ultrasound,ca125,ct scan)
THanks,
Mary

[rmarie]

My CA 125 was 14, I was told it was cancer, probably only a stage 2, it was 3C.  I only went to 99 post op.  I have been told it may not ever go above normal, but if it doubles or triples my gyn- onc will look for a recurrance

[ddemaso]

My CA125 was completely normal yet I had a 13cm tumor in my abdomen that was cancerous.  There are no good tests for Ovarian Cancer, that is why we have to get the word out about the symptoms because women walk around feeling these things that are the symptoms of Ovarian Cancer and don't even know that they have it...gas, bloating, constipation...among others.

Danielle

[Anna-maria74]

I had an elevated ca125 with a benign mucinous cystadenoma, ironically mine was about the same as Becky and she had 3C so there is an illustration of the acuracy of the test lololol

Anna x

[chigey]

The crazy thing is I just found out my ca125 was 77 the day before the surgeon removed an ovarian mass the size of a pineapple. after surgery 243. then aftereach chemo 27, 18, 11 for three months of treatment.  I think you should go with your gutfeeling my results went up to 32.7, and bounced back and forth between 35.7 and 42. with single dosage of taxotere.  I went back on carbo and taxotere just had my second treat of  today my CA 125 blood testwas taken this past Wed. and it went down to 18.7.  so go figure I think for me it is not how the number is it is the activity of the numbers.  Most important for me is my gut feeling.  best wishes everybody

[girlie123]

this is the first time ive been here.please be patient with me is there anyone out there that has survived stage 4ovarian cancer

[gah_70]

Well, mine was 3053, so I think once it gets to that point, it's a pretty sure bet that it's OvCa.  My local doctor, understanding he was not equipped to handle it, immediately called a GYN/Onc at a major hospital and sent me there.  Once my surgeon took a look at me, I was in surgery in less than 5 days.  But still, they couldn't say 100% until they did surgery and took a biopsy.  

Gail

[sk2006a]

i have a friend with ovca, and she says her oncologist told her that anyone with a ca125 over 35 should see an oncologist.  i guess some are just more cautious than others, erring on the side of caution and all that.  or maybe because he's an oncologist and not a gyn!

[Vperk]

Hi, I am 48 and was premenapausal.  My CA-125 was 249. Vag. US showed fibroid tumors and a 6 cm cyst on my left ovary.  A complete hysterectomy was performed and besides the above, my dr. found  during surgery that I also had endometriosis, but no ovca.  Unlike alot of the ladies on this forum, I didnt have any symptoms (other than a bloated tummy, which I thought was a midlife spread.)My problems were all found at my regular annual visit in which my dr. told me my uterus was enlarged.  I was sent for the US and Ca-125. The only thing my dr. really said was that they wont know for sure if I have ovca. until they get in there, but she felt that since my US didnt show  alot of free fluid, she felt that was a good sign.  So in my case the CA-125 was not reliable.

[dl105]

My ca125 was low  39 and told by my Dr it was not high enough to be concerned..wish that would have been true.

[urbangal]

thanks everyone for your answers..hopefully my low numbers mean something as it seems most were elevated(somewhat)before
diagnosis.
Mary

[chickpea_and_me]

My ca-125 was a 241 and yet my doc insisted I didnt have cancer because so many other things can cause a false positive.  Surgery was the only way we caught my cancer at stage 2B. But I'm grateful for the ca0125 because it is what got the ball rolling for me to push doc to do the surgery!

Kimberly

[nyc lady]

Urbangal...I mixed you up with someone else regarding BC pills and endo, but, I can't find who it was...ooops, menopause...but, remember, that most ovarian cysts are benign.

[nyc lady]

Unfortunately, as Becky said, the CA125 test is not very helpful at all in dx'ing Ovarian Cancer.  It is best used a tumor marker in someone that has already been dx'd.

Ovarian Cancer is usually detected in late stages because there are no diagonstic tests.  Most women that have symptoms are usually treated for IBS.  

The thing that you have to remember, is that most ovarian cysts are benign.  Well over 90 percent of ovarian cysts are benign.  Most doctors will not consider operating on a cyst that is less then 5 cms.  Under 5cms most doctors will "watch" the cyst.  Depending on the type of cyst, quiet often birth control pills will keep the cyst from growing.

From your other posts it seems like you are questioning the way your doctor is treating your case.  If you are not 100 percent comfortable with your doctor and his/her responses, then I urge you to find a doctor that you can talk to.  I can only share with you the information that I have gained about ovarian cysts, I do not know much about endo.

[Tybear]

You really can't put too much into that test. My CA125 was 46 which is fairly low, yet still above normal, and I had stage 3c Ovarian Cancer. I was also only 26 at the time, so I guess that's why they say it's not a good indicator for premenopausal women. Hope this helps!
Becky