Aa
My 70-year old mother was diagnosed with stage IIIC primary peritoneal ovarian cancer in October, 2006. Mom had debulking surgery and a radical hysterectomy that month. Her initial, pre-surgery CA-125 was over 31,000. The surgeon could not remove a >2cm tumor attached to her intestine, nor could he issue intraperitoneal chemotherapy due to the size/position of it; he also cited her age as a factor against doing so. He said that he "got what he could" and told us that the average prognosis for someone in her condition is 33 months.
Mom has undergone 4 rounds of chemo with minmal side effects, yet her CA-125 is still high, at 9,100 despite the fact that her tumor has disappeared! She is also on a vegan diet, drinks Essaic tea daily and takes various supplements.
It's confusing to us as to how the CA-125 level can be still so high. Her oncologist doesn't seem to know why. Granted, a drop of 22,000 in 3 months is significant, but if the tumor is gone shouldn't her CA-125 be almost back to normal?
I am with the friend here who states that the CA-125 should be on the short list of tests performed at a woman's annual physical. In addition to that I would advise any woman over the age of 50 who is taking HRT to get a second opinion. Mom was on a low level HRT for 20 years. Given what has just been issued by various cancer experts, HRT should not be taken over a long period of time. Mom's gyne told her that she should continue to take it post op, which we strongly advised her against. I also agree that there is a shocking lack of awareness of this disease that if found in its early stages has a high "cure" rate.
Thanks to all of you in advance for reading and caring.
Mom has undergone 4 rounds of chemo with minmal side effects, yet her CA-125 is still high, at 9,100 despite the fact that her tumor has disappeared! She is also on a vegan diet, drinks Essaic tea daily and takes various supplements.
It's confusing to us as to how the CA-125 level can be still so high. Her oncologist doesn't seem to know why. Granted, a drop of 22,000 in 3 months is significant, but if the tumor is gone shouldn't her CA-125 be almost back to normal?
I am with the friend here who states that the CA-125 should be on the short list of tests performed at a woman's annual physical. In addition to that I would advise any woman over the age of 50 who is taking HRT to get a second opinion. Mom was on a low level HRT for 20 years. Given what has just been issued by various cancer experts, HRT should not be taken over a long period of time. Mom's gyne told her that she should continue to take it post op, which we strongly advised her against. I also agree that there is a shocking lack of awareness of this disease that if found in its early stages has a high "cure" rate.
Thanks to all of you in advance for reading and caring.
I wouldn't say that CA125 is useless, but it is UNRELIABLE.
I had a huge ovarian cyst and elevated CA125 to 59. But my gyn/onc wasn't overly worried, because he said the elevation could have been for several other reasons.
I had laparoscopy, and no cancer (thank God), and the CA125 was elevated because of the huge cyst that burst in the meantime and some old infection. But I was worried out of my mind because of this number, even though the doctor tried to tell me that it is unreliable (many false positives).
So, I think the test are good if there are other indications that it may be cancer (ultrasound picture, MRI scan, symptoms etc). The biopsy really is the only way to really know.
I had a huge ovarian cyst and elevated CA125 to 59. But my gyn/onc wasn't overly worried, because he said the elevation could have been for several other reasons.
I had laparoscopy, and no cancer (thank God), and the CA125 was elevated because of the huge cyst that burst in the meantime and some old infection. But I was worried out of my mind because of this number, even though the doctor tried to tell me that it is unreliable (many false positives).
So, I think the test are good if there are other indications that it may be cancer (ultrasound picture, MRI scan, symptoms etc). The biopsy really is the only way to really know.
I know of a couple of women who can't judge how they are doing with a CA.125 test.... it doesn't work for them, so they need to go for scans every 3-6 months to see if the cancer is spreading. At present my CA.125 is 7500. I often wondered how one would feel with a CA.125 this high, when the 'normal' is 35. But I feel great.. wonderful appetite, no pain or discomfort, and still lead a very active life. According to my Oncol. we ladies place too much importance on the numbers, and I'm beginning to think that maybe he is right. I lost a dear friend last week... a lady who I met on another Forum... and her CA.125 was only 400, but her cancer had spread beyond control.
I'm inclined to think that the CA.125 is an indicator of sorts, that tells us that all is not quite right, but from what I've gathered, it's not very reliable for younger women. As some others have mentioned, this is the 'silent killer' because the symptoms can cover other problems. In my case, after going to and from the Doctor for almost 9 months with the symptoms, and getting told I have IBS, Gastro etc. and then they decide to do a scan because I was throwing up my coffee... So sorry dear, but you have Ovarian Cancer. Nice one!!!
I now have the knowledge to pass onto my daughter, what to look for, and to insist that the Doctors carry out as many tests as necessary to find if there is ovca. I've told her not to be 'fobbed off' and if there is no satisfaction coming, then go to as many Doctors as necessary to get the results.
I hope everyone is feeling well, and their scans etc. are showing good results....best wishes...Helmar...
I'm inclined to think that the CA.125 is an indicator of sorts, that tells us that all is not quite right, but from what I've gathered, it's not very reliable for younger women. As some others have mentioned, this is the 'silent killer' because the symptoms can cover other problems. In my case, after going to and from the Doctor for almost 9 months with the symptoms, and getting told I have IBS, Gastro etc. and then they decide to do a scan because I was throwing up my coffee... So sorry dear, but you have Ovarian Cancer. Nice one!!!
I now have the knowledge to pass onto my daughter, what to look for, and to insist that the Doctors carry out as many tests as necessary to find if there is ovca. I've told her not to be 'fobbed off' and if there is no satisfaction coming, then go to as many Doctors as necessary to get the results.
I hope everyone is feeling well, and their scans etc. are showing good results....best wishes...Helmar...
Sorry simplystar but the ca125 test does not have the same success rate as the pap and mamo. It can not be used as a blanket test because there are way to many false positives and negatives. A case in point is that myself and Becky both had the same result - slightly elevated. Mine was benign hers was 3C.
If the ca125 was the deciding factor on whether/when to perform surgery 20 percent of woman suffering the disease would go undetected (1 woman is too many in my book). It is usefull for some woman in assesing recurence of the beast and the success of chemo but a screening test..........no way!
Anna x
If the ca125 was the deciding factor on whether/when to perform surgery 20 percent of woman suffering the disease would go undetected (1 woman is too many in my book). It is usefull for some woman in assesing recurence of the beast and the success of chemo but a screening test..........no way!
Anna x
My name must have been on your mind for some reason as I wasn't involved in the above postings. I did post a question back on 12/26/06 that read...Anyone have low CA125 results prior to positive OVCA dianosis after surgical evaluation?
My gyn refused the test to me back in Feb. 06. My GP, a neighbor, did one for me in July, score of 7. He said I should be relieved...but the saga continues. Peace and blessings.
My gyn refused the test to me back in Feb. 06. My GP, a neighbor, did one for me in July, score of 7. He said I should be relieved...but the saga continues. Peace and blessings.
I think the CA-125 test can be useful, along with other diagnostics. My CA-125 was 295 prior to my surgery to remove a 13 cm tumor and my doctor didn't really discuss with me what that meant. I went into surgery not really sure if what I had was cancer or not, and leaning towards not from what I was told. I know that the only way to tell for sure if you have cancer is to biopsy the tumor during surgery and that a CA-125 can be elevated for other reasons, but, from what I understand, it's usually not elevated as much as mine was unless cancer is involved. If I had known what that test result meant, I wouldn't have been quite so surprised after surgery and probably would have been more prepared to accept the news that I had cancer. I have a cyst now on my ovary and my last CA-125 test was at 11. This gives me a little reassurance that it probably isn't cancer, but I also know that it still could be. I really wish there was another test that was more accurate, but I do think that the CA-125 can be helpful in certain cases (not all). Other diagnostics should be used in conjunction with it.
Oh and those figures are rubbish too. Anything under 35 is NORMAL, between 35 and 65 is moderate risk and over 65 is concidered more worrying.
Anna x
Anna x
I am sorry to disagree with you mermaid, but The CA125 test is one of the markers for CA125. Daughters onoco ordered it before and along with her other scans etc. Mayo ordered it prior to surgery and 1 week after surgery. They did 1 after the 3rd chemo and now she is getting one done today at 6 months post op. I am a strong advocate of seeing that the test is done on yearly physicals for all women. They do the mammograms and paps, this could save a lot of women from developing CA past the 1st stage. I know it is not always realible, but then neither are mammograms and pap smears. I think the more tests that are developed to test for cancer, will make the death rate go down. OVCA is a silent desease, many women do not know until it is too late. A high CA125 will raise the flag for further testing. Fear can be handled, OVCA needs to be dealt with.
Scrap that 'risk' boll**. CA125 is very contraversial in terms of diagnosing OC - mine was elevated and because I didnt have endo I spent 4 weeks thinking I had cancer (I didn't). Test strikes the fear of god into woman, which might be worth while if it actually TOLD us anything usefull. I personally feel the test should only be used after a cancer diagnosis and in future would refuse the test myself.
In the UK it makes little difference to the surgery date or who does it so what on earth is the point. You know some doctors even SAY that the test doesn't mean anything WHY BOTHER THEN?
Anna x
In the UK it makes little difference to the surgery date or who does it so what on earth is the point. You know some doctors even SAY that the test doesn't mean anything WHY BOTHER THEN?
Anna x
MY daughter was pre menopause, and the onoco said that reading the CA125 results was the determining factor to rush the surgery. I don't want to disagree with any one, just don't tell me that the test is not worthwhile. It will not catch all with the readings, but those that it does catch can have the scans etc. Maybe then the doctors won't be saying IBS, and all the other catch phrases they use. I have been having pap smears and mammograms for many years, I will not balk at one more test. If the test had been run on my daughter 4 months previous, with plenty of her complaints, while messing around with an incompetent Doctor, she might not have had to have such evasive surgery. This doctor kept telling her, "You do not have cancer"
I never said it was the only test used, daughter had all the scans also, I am only saying that a blanket test used along with the yearly exams would, I am sure, pick up some early cancers. Did you ever get a suspecious pap smear and have to go get another one? I did several times. 22,000 women per year, is worth the test. I am only trying to say that if it will save women from the more evasive OVCA then I say "ask for it". Pap smears and mammograms do not mean cancer either. But we all do them. I will say no more on this, as I will not argue, and no one will change my mind after talking with the staff at Mayo's. 99% of women do not even know about the CA125.
I too feel that I need to caution everyone on the use of the CA125....it is best used as a tumor marker once OvCa has been diagnosised and it is not a reliable test for everyone, especially pre-menopausal women. There are very very very many false positive readings and the thought of a doctor operating and removing a women's ovaries because of an elevated CA125 is very scary. There are other tests that need to accompany the CA125 before making a determination. There was an email a couple of years back that went around the internet asking everyone to get a CA125 when they go to their doctors as this can save lives in diagnosising OvCa, it was invalid with the information listed on SNOPES as to why it is not valid.
The CA125 is a very important test, when properly used....and also as there are very many false positives, there are also many false negatives.
The CA125 is a very important test, when properly used....and also as there are very many false positives, there are also many false negatives.
Just to add a little to the discussion, the CA125 is not reliable in pre-menopausal women. Until they come up with a test that reaches all age groups, awareness seems to be the key in detecting it early. I am now 28 and my CA125 didn't budge at all, even while cancer was growing and spreading throughout my abdomen. My Dr will never use it as a judge of anything in my case. I also have to agree with Anna, in that 35 and under is normal (at my oncology clinic at least) - I guess I haven't been made aware of the other ranges that were mentioned.
Becky
Becky
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