CA-125 at 44 should I be worried?

[bugsitch]

I have had problems with pain in right abdomen for about 13 months and has now become the left side as well. My gyno has sent me for 2 ultrasounds and an MRI. What I have been told about the test results are that I have midly enlarged ovaries and a possible cyst. She would not tell me how enlarged they were but that she would like to do a CA-125. I got the results back today and they were at 44. She is also sending me to a gyno-onco on the 29th. She has said that he would probaly dicuss the removal of both ovaries. I am only 24 years of age and have not had children yet. Should I been very alarmed with the CA-125 being above the "magic" number? Are there any questions that I should ask the new doctor? I am really scared about this and any information would be greatly appreciated!

[bugsitch]

Thank you for your comments. They are really helpful and hopeful. Like I said in the last post I have been in so much pain and it now seems to be there a lot longer than it used to. It just amazes me how I can be fine one moment and in severe pain the next. I just want answers and have never been this nervous ever before. Once again I thank you and will update sometime next week. Everyone of you are in my prayers I just can't phantom what some of you are going through. Hang in there!

[JulieAM]

I agree with everyone else, it is ridiculous to be talking about the removal of your ovaries at this stage.  I had a large cyst on one ovary and a CA-125 level of 360, along with pretty severe pain that had been going on for several years.  The cyst, CA-125 level and pain were all caused by severe endometriosis, which I had removed with laparoscopic surgery.  (At least, most of it was removed.)  I feel much better and still have all my parts.  I have read that endometriomas (cysts caused by endometriosis) can cause Ca-125 levels in the thousands, so try not to be so worried.

[nyc lady]

The CA125 is not reliable in pre-menopausal women.  There are numerous reasons why it could be elevated.

It is great that you are going for a 2nd opinion with a GYN/ONC.  They are the experts and many many many women are treated by them that do not have cancer.  They have 3 years additional training then an OB/GYN in gynocological issues....when there is any doubt these are the doctors to see.

Good luck and please let us know how your appointment goes.

[GlendaS]

Definitely express to the gyn/onc that you want to preserve your fertility! When I was diagnosed with immature teratoma at age 26, my CA-125 was at 295 and my CA-19.9 was at 294. (I don't think CA-19.9 is always elevated in people with ovca. They just happened to test and mine was.)They only removed one ovary and tube. Now I have a cyst on my remaining ovary and my CA-125 is at 10, but my CA-19.9 was somewhere around 40 and I have had two gyn/oncs tell me not to be worried that it is slightly above normal (and I've had cancer!). There are other things that can make those tests go up. Whether or not they can preserve your fertility will depend on what they find when they do surgery, but make sure your surgeon knows that you don't want both ovaries taken unless it is absolutely necessary. I think that when you talk to a gyn/onc, he or she will definitely agree with you on the fertility issue and they will probably tell you that there's always a chance that it could be cancer, but probably won't be as concerned as your gyn sounds (from my experience anyway). Good luck to you!

[Anna-maria74]

NOOOOOOO NOOOOOOO NOOOOOOOOOOO second opinion. Why on Earth are they discussing removing the ovaries at this stage. My CA was higher than yours and I was benign. The only reson I lost an ovary and fallopian tube was because of the size - it was inevitable. No way was I giving up the other bloody ovary. Tell them you wish to preserve your fertillity dont just sit there and nod in agreement like when you've had a bad haircut.

Anna x

[SimplyStar]

Cysts can raise the CA125 level, be sure you get a good second opinion before they take your ovaries.