Ovarian Cancer Community
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Avatar universal

Want to ask a question

Hi everyone.

I have another forum I visit relating to chronic pain/illness.  Recently, a story was posted concerning the CA-125, maybe some of you have seen it, I know I have.  Starts talking about Gilda Radner and how we all should insist on having the test run.  Very moving, very scary too because of it not mentioning how unreliable this test can be.  Anyway, it's caused a bit of a scare.

My question, probably more than one question to whomever might have an idea:  Statistically, on this board with the more regular posters - how many had elevated CA-125 with Cancer; without?  How many had masses or cysts identified on ultrasound and ultimately, they went away?  Had surgery?  Found cancer? Or not?

I'm just really curious.  I'm also wondering how many women are being shook up and scared by the "C" word unnecessarily.  How much of this is just because of the big managed health care system's fear of lawyers?  How much of what we are going through is normal and it's only recently, with all the full disclosure rules governing health care that we are being made over-aware of every little ache, pain, bump and blemish?  I'm all for being fully educated, but the way my health care provider handled things scared the living **** out of me.  "Your CA-125 was elevated, you could have cancer."  No further explanation until I started digging on my own.

Just some questions.  Hope nobody is offended by them.  It just seems like too many of us are getting all scared to death because not enough information is given initially when this test is done.  Thanks, Barb
12 Responses
Avatar universal
I've heard all different thoughts on the CA125 -- mostly I've read that they aren't that reliable or they are inconclusive.  If you have endometriosis (like I do) you could have an elevated CA125 read.
Avatar universal
That is one of the reasons many Drs. don't give the test routinely. Since I read that email back in 98 I have asked 3 different gynocologist and they all said it was too unreliable with too many false positives. Now granted this was without any other symptoms so I guess what I am saying is that it is not used much as a screening test. They compare it to the PSA test for prostate cancer but it is much more reliable. I, too, am interested in other's experiences. Since I am postmenapausal with a cyst I am going to ask my GYN tomorrow about it. At my age of 69 I don't feel I can afford to wait and see too long because of other health problems. At the same time surgery is always risky and especially if you have breathing problems so I am not anxious to have surgery especially since I live alone and would have to rely on friends as I have no family. My friends say "Oh, no problem, that is an easy surgery to have an ovary removed" Course they had all this female stuff done when they were 40 so I don't know and would like to hear what other people have experienced. It seems that there are more surgeries down where there is no cancer found which of course I am glad of but could it be that there is just too much surgery being done. I just really don't know. Thanks to all that answer.
Avatar universal
Hi Moose,
I am glad that you are pointing this out. I myself had elevated ca125 and was scheduled for TAH. I had an uncomfortable feeling abut the doc and went to Cleveland Clinic where I was given reasonanble advice and my questions were answered.
I have a history of endometriosis and my ca125 ws rising. I was not told that it was an unreliable test at the time nor were there unrelated reasons to cause it to rise. I did research myself and found out. My mother had borderline ovarian cancer 5 years ago and is fine.
So to all my sisters out there, don't put all of your faith in 1 test. Have pelvic ultrasounds and keep coming to this board. There are many sisters out here who are chockfull of information.
Avatar universal
Barb, when I first began posting on this site in 2004, I was seeking answers from women who had been through the process that I was beginning.  I received great advice from two women  posting on the forum.  One had just had her surgery, and the other had her surgery shortly after my first post.  Both had elevated CA-125 levels.  I recall KarenC having a level around 100.  Both women were sent to oncologists  by their regular gyns.  Both had surgery performed by a gyn-oncologist because of fears of cancer,  yet the pathology reports came back cancer-free.   I seem to recall anther woman posting a story to the same effect during the past year and a half.

When I was going through my pre-operative imaging and tests, I requested the CA-125 test.  My doctor gave me one, but cautioned me that the results would likely be meaningless.  

About a year before I began having symptoms of my first cyst, I received a forwarded e-mail from a well-intentioned friend.  In it, a woman claimed to be dying of ovca, and that she could have been saved if the doctor had only given her a CA-125 test.   She went on to claim that all women should have the test annually.  Well, I researched the subject, and learned that the test is (1) not reliable, especially for women still of reproductive age, (2) not reliable for women with certain other health conditions, and (3) useless for ovarian cancers that do not secret that  antigen.  

Now it's time for my usual rant, about how we can send men to the moon and back, but we can't devise a reliable test to determine if a woman has ovca without cutting her open!!!
Avatar universal
my sister had ca-125 test done and because she had an oc that dosent show up on that test she got the all clear even though she did have oc at that stage if in doubt get it out is now my sisters beleif unfortunately too late for her as it was too adv she now just fights for more time 10 years and still going
Avatar universal
I like the comment about being able to send men to the moon, but no reliable test for OC.Do you think if OC was a men's disease research would be so poorly funded? Anyway, I got the email about the dying woman also, who could have been saved by a CA 125. Went right to my G.P. and asked for one. It was 37 then over the next 2 months 48, 58 then 95.5! She referred me to a gyn who referred me to a surgeon who said there was NO option other than a Total Abdominal Hysterectomy.I then went for another opinion, who agreed with them, although he explained just why he thought my risk was low (like my complex cyst was growing SMALLER).. Anyway, went to pre op apt they took another CA 125. Before surgery, I asked what it was-it was 16! I cancelled surgery, and was told I was "gambling with my life". Talk about fear! I went to another, well respected gyn. He looked at all my scans bloodwork,etc. Did another ultrasound right there - NO CYST -it dissolved. Also my ovaries looked fine. He said I didn't need surgery at all in his opinion. I will follow up with him in 3 months. I am SO GLAD I paid attention to my own gut about things. I am happily going about my life. This forum was such a help and support to me -all of you women are great to reach out to each other like this!
Avatar universal
I have kind of hit the end of this discussion, but there is a lady with Stage IV ovca that had cysts come and go.  Her CA-125 would be high normal then mid normal. Thru frustration she asked for a diagnostic lap to get a bird's eye view.  She had "seedlings" all over her bowel, omentum, bladder, etc.  She had cystadenoma.  It reacts like a cyst-it comes and goes, spills its content everywhere.  She fights the disease and hopes for a near-win because she feels this late in the game she will never tackle her beast.  Her problems first began in her late thirties and she was 43 before she could persuade the docs to go against the test results.  That is why this disease is so scary.
Avatar universal
Let me frame this once more:

Of the women who are currently posting here regularly, who have had surgery, how many have actually found cancer?

I'm doing like cip right now and following my instincts, based on what I feel is really good advice from my gyno because I just had the massive abdominal surgery and would like to not go through that again right now.  However, I'm interested in stats, from the trenches, right here.  We all ended up here because someone told us we had a cyst, or a growth or a cancer antigen found, but honestly, how many really ultimately receive a diagnosis of ovarian cancer?

Thanks, Barb
Avatar universal
Thanks everyone.  Good discussion.  I've been kicking around these questions and thoughts since I saw the doctor on January 11.  I didn't know quite how to put it to words, still don't really.  I just so got the feeling after meeting with the gyno that so very much of what I'm going through, and many other women, is absolutely normal.  We just know about it because of technology but mainly because of this CYA stance that doctors have been forced to take these days.

In the last two years I've been scared more than once because of some finding in a blood test.  First, I had lupus, lyme disease, then MS, even tetanus was batted around, then RA, then fibromyalgia, ruptured cervical discs, ruptured lumbar discs, then maybe thyroid/pituatary, pre-diabetes, insulin resistance, gall bladder, then whatever. . . I saw rhuematologists, and every kind of ologist you could imagine.  I was even tested for HIV, Hep C and all those other really pleasant nasties because of my ex being a former IV drug user.  Scared the living daylights out of me.

All because I had a factor in my blood that said I had a large amount of inflammation in my body of an unknown origin.  Came to find out I had a slow leak in my colon that was tripping out my autoimmune system.  Chronic Diverticulitis, that went untreated because of us being off on a wild goose chase forever.  Gallons of blood, half a dozen MRI's, CT scans, even epidural steriods and not once, did my colon get looked at until I had a major blow out and came very close to dying this last June.  They tell me I have active titers for Epstein-Barr, herpes zoster and cytomeglavirus, that scares the **** out of me and in researching, I learn that most of the population of the world carries these viruses around.

Got that dealt with and now this.  "You may have ovarian cancer."  And it's just seeming like yet another wild goose chase.

Here's my rant ladies.  Thanks for listening!!!
Avatar universal
Very few is what you are going to find which is similar to  a comment I had made in an earlier thread.  We are all here in search of answers because of a fear of having ovca.  Most often it is just that a fear, but because ovca is such a sneaky disease, you have to weigh the symptoms being experienced and no amount of statistics are going to satisfy  some people's personal fears.  I can think of maybe 6 on this site that I personally have posted to or have gotten a post from that actually have ovca.  this is technically a site for ovca and but we make it a site of benign issues with malignant fears.  In a sense that is great news showing more often than not, ovarian cysts, pain,etc. are benign and the chances of getting/having ovca is slim.  I see what you are trying to get at Moosie, and I was not trying to disprove anything only to give insight on how terrible the disease really is to those that must endure it.  I would like to know what you do come up with at the end of your poll.  I have a diag lap scheduled next Fri and I will let you in on the pathology.  I found this site by accident because I was driving myself crazy in fear when I saw the u/s and received the report.  I know the bad things that can happen and its hard to see the good. Kristie
Avatar universal
Hi Kristie.

Just to clarify, I didn't think you said anything that I or anyone else should feel disapproval about, nothing whatsoever.  I'm just trying to make the best educated decision I can.  All that seems to come from the doctors is a more cold and clinical view.  I really just want to know what the reality is here, not from a doctor's book of statistics.

I think what's going on with me is that I'm having to make yet another really huge medical decision in less than a year's time.  With my surgery for diverticulitis the ultimate decision was mine to go ahead with the partial colectomy.  Took three months to come to that decision after being on antibiotics for the entire time and then ultimately deciding that I should have the surgery done while I'm relatively young.  Now I feel I'm in that same boat again. . .  I've barely recovered from that ordeal, and now I'm faced with a similar decision, and the doctors pretty much will not step up and give a real opinion, like they were trained to do.  The surgeon didn't just say, yes, you should have this procedure and here's why, he said given my situation, it would be a reasonable option - option?  Bowel contents leaking into my abdomen?  How's that optional?  And that is an argument the gyno used - surgeons don't really want to do surgery unless there is no other "option."  Oftentimes they are finding it creates more problems than it solves because of how different people heal, etc.  Adhesions, nerve damage, muscle damage, etc.  For me, that was why I've chosen the wait and see option.  The recovery from the bowel surgery is being a real bugger, more than I anticiapted.  I'm not ready for that again.

But that's aside from this.  I know how sneaky ovarian cancer can be.  It's driving me crazy that this should still be such an unknown territory.
Avatar universal
It just so happens, my dad had a very bad case of diverticulitis 15 years ago.  He is a stubborn man that thought nothing could get him down.  He ignored bowel issues many months before trying to go the doctor and ended up in the ER on several occasions with severe pain and rectal bleeding.  No one could figure out what was wrong with him.  The last trip he took to the ER sent him directly to OR.  His bowel had ruptured.  He had had a small leak that finally gave way to a big bust.  They removed a large section of his colon and was on antibiotics for many months after.   He lives in a large city in Texas and you would think they would have found his issue sooner.  He now suffers from diverticulosis and can tell if his pouches are getting infected.  He watches his diet somewhat. thru prayer or educated guessing, just whatever it takes, I hope that you can come up with a decision that you can best live with.  I will be here to help you in anyway I can.
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