Elevated CA125

In February 2003 my CA125 came back at 12. One year later it's at 30.

I'm on pins and needles! I've read that even though the levels are in the normal range women have still been detected with ovarian cancer and that it's the rise in the number that's the indicator.

My mom died of ovarian cancer over 10 years ago. My sisters and I are all concerned. Does anyone have any information to share about this? Thanks.

My question would be what does your doctor say about it? Has he/she scheduled other tests?

My CA-125 came back as 25. It has me a little concerned as well. What I've read is that the high reading might be an indicator of ovarian cancer, or it might be elevated due to endometriosis, or benign ovarian cysts, P.I.D., or even pregnancy. My understanding is that it is more useful as an indicator for doctors to determine if the treatment they are using is effective (that is, if it decreases during treatment.)

You are still within the normal range (under 35). CA125 has false positives and negatives and other things besides cancer can affect it. Have you had a rectal-pelvic exam and a transvaginal ultrasound as well? Putting those three results together forms a better picture of what may be going on. Also, endometrisis can cause a rise and other things--we know because I had elbow surgery a week before chemo and when I had CA125 done day 11 after chemo my arm was still very bruised and badly swollen that my CA125 will be higher--due to that as well.

Hi,
My Ca-125 was 399 at the time of my surgery. After surgery it was 21. Then I went on chemo for 6 months. I ended with a score of 6. My last Ca-125 was 9. And I just had another checkup. I don't know the score, don't care....we have to live our lives!! The point is, we have to go on...no matter what. I don't keep track of my scores because I trust my doctor to tell me when to really worry. I want to spend every moment of my life caring about the things that really matter. MY scores, my life or death...they are all question marks in the future.

Hi Debra,

As others know, from the past, my ca125 number bounces around within the normal range alot. Every time it goes down, I breathe and every time it goes up I panic. All this is normal also.

However, I was told by on oncologist and oncologist/gynocologist that as long as both of their exams are normal, which they always have been, that is more important than the number jumping around within the normal range.

I know that this is easier said than done, but please do try and stay calm.

Rosalie

Even different labs can come up with small differences in the CA-125.

I represent the other side of the coin: someone with a high CA-125 (200 ) who did NOT have cancer -- just severe endometriosis. We do continue to track my CA-125 to look for returning endo, but it's always been within normal limits -- even though it bounces around, I'm willing to settle for that!



Audrey

Today my oncologist said that a woman can have a really high CA125 reading and very little cancer, and others can have lower readings and have much more cancer. I agree with you Debralee. It's a much better tool for indicating how well the chemo is working. My oncologist said that even after 2 to 4 treatments they can tell if it's working by how low the CA125 is. So I've had 2 treatments and it won't come back for 6 days. I'm on pins and needles too! It's hard not to worry. My mom died of breast and ovarian cancer when she was 42. I'm kicking myself for not doing more about this earlier. But since last spring I had been in to the doctors about 20 times. My gyno thought it was endometriosis and didn't want to give me a CA125 because it could be a false positive. In retrospect I should have demanded it. She knew my history with my mother. I did have an ultrasound 2 weeks later and that show an ovarian cyst. Nothing more. I just wish I had done more sooner.

s DebraLee

Familial ovarian cancer accounts for only 10% of all women diagnosed with ovarian cancer.
The ca 125 alone is such a poor diagnostic tool.
The cancer center where I am treated did set up some good guidelines to follow for the females in my family.
Pelvic exam every six months to include a recto-vaginal exam.
This is the method where ovaries are best palpated.
A transvaginal ultrasound once a year.
Ca 125 once a year.
And most importantly, if you are able, take birth control pills for at least five years.
Hope this helps.
I really would not be too concerned with your present ca 125 reading. A newer more exact blood test is in the works.
And hopefully will be available soon.

karenann

Many thanks to all of you. Your words of wisdom have helped tremendously!

After I last wrote I had a transvaginal ultrasound. The doctor said everything was normal except for 2 fibroids he's been watching for some time now. The largest is 2 cm. I was happy about the results of the ultrasound, but lately I haven't been feeling well.

To try to make a long story short - my mom died of ovarian cancer at the age of 67; prior to this she had breast cancer as well. My 3 sisters and I, as do all of you, know well how silent a disease ovarian cancer is. I just want to be on top of things.

After my mom died my doctor put me on birth control pills, which I had been on for 11 years. A new gyn recommended that I stop taking them when I turned 50 in Jan this year, which I did. The doctor who does my transvaginal ultrasounds stated that I should find out what my estrogen level is and if it is in the normal range (which would indicate I'm not going into menopause anytime soon), that I might want to consider going back on birth control pills. He also said that bc pills are stronger than HRT. I was surprised to hear that. At this point I don't know if I should go back to taking them or not.

I say I haven't been feeling well because my stomach is bloated, I have abdominal and back pains, I've gained weight, I'm tired. I just don't know what to do. I have an appt to see my gyn on 2/16 to discuss all this with him.

I'm wondering if the fibroids are causing my problems, or maybe it could be endometriosis. Aside from having surgery, how can a woman tell if she has endometriosis?

Your thoughts on any of this would be greatly appreciated! Thank you for helping me.

Debra,

As ((Karenann) says, genetically influenced breast cancer is rare, but having a mom with both breast and ovarian cancer raises your risk somewhat.

You might consider having a consultation with a cancer geneticist. Many major medical centers have one. They review your entire family history and can discuss your risk and what preventive and screening options are available. They can discuss the pros and cons of genetic testing.

Dorrie