when to worry about ca-125

[worrynurse]

I HAD RECENTLY HAD RATHER LARGE HEMMORHAGIC CYSTS ON BOTH OVARIES...IT TOOK A WHILE TO DECIDE WHAT THEY WERE.I HAD AN ELEVATED BUT ON THE LOW SIDE CA-125 (46). MY ? IS WHAT TO DO NOW. IM THINKING IT IS D/T THE CYSTS .... BUT WHEN SHOULD I GET RE-TESTED IF AT ALL? THE DOCS DO NOT SEEM CONCERNED AND I KNOW ABOUT ALL THE FALSE POSITIVES WITH THIS TEST AND FALS NEGATIVES....ANY IDEA WHAT THE RECOMMENDE F/U SHOULD BE?



This discussion is related to CA125 and questions to ask......

[fatimaadil]

hi, i also have a cyst in my right ovary. my CA 125 level is also very high 105 U/ml. iam  also not getting pregnant due to the preseence of ovarian cyst its 7.5x7.6 cm large. please tell me how did your 6 cm cyst shrink to 2.4 cm. did u take any treatment or any medicine?

[worrynurse]

I FEEL THAT THE CA-125 WAS ELEVATED FOR ME BECAUSE OF INFLAMMATION WHICH SEEMS TO BE A COMMON HIGH RESULT...MY DOC WAS NEVER REALLY CONCERNED WHEN I HAD AN ELEVATED LEVEL...BUT I STILL WORRIED EVEN AFTER EDUCATING MYSELF THOROUGHLY ABOUT IT. IT IS STILL TOUGH TO HAVE A HIGHER RESULT ON A "CANCER ANTIGEN" TEST. THAT BEING SAID...A MALIGNANCY WOULD NOT KEEP CHANGING SIZES (GET SMALLER). IT MAY NOT BE THE SAME CYST THAT HEY ARE LOOKING AT!

WHEN YOU GO TO THE GYN...COME RIGHT OUT AND ASK THE QUESTION THAT IS SCARING YOU SO MUCH...I THINK SHE/HE WILL TELL YOU THAT BECAUSE THE CYST HAS CHANGED.(GOTTEN SMALLER)..IT IS PROBABLY HEMMORAGHIC AND NOT OF GREAT CONCERN (HEMMORAGHIC ARE ALSO UNDER THE CATAGORY OF COMPLEX CYSTS) BECAUSE IT DECREASED IN SIZE (I WAS TOLD) THEY TEND TO RULE OUT ENDOMETRIOMAS (THEY TEND NOT TO DECREASE)

BY THE TIME YOU READ THIS YOULL PROBABLY HAVE ALREADY HAD YOUR VISIT
LET ME KNOW WHAT HAPPENED.
DONNA

[Sandymac]

I don't know if you caught the link on the "Health Pages" regarding the CA-125. I think there may be some trouble with the link  now though. Basically it was from the American Cancer Society. They do not recommend the CA-125 as a screening tool for Ovarian Cancer. There are too many high numbers that are attributable to other things and there are ladies with low numbers that have Ovarian Cancer. You might try Googling CA-125 or going to Snopes and read all the articles about this same view.

The CA-125 is supposed to be used as a marker for those already dx. with OVCA. It monitors the numbers to see how well the current treatment is working . People get so upset with the CA-125 results and that is exactly the reason they are not being used as screening tools. Now, if you are older (post menopausal) there are usually not as many things to throw the numbers off so the test is given a little more merit. But, by all means, don't panic about the test. Further your cyst has shrunk which is a good thing and that cyst is really quite small.. Also, you need to remember that 95% of all cysts are benign. So please don't worry until you are told you should worry !! They will probably continue to monitor even for a few more cycles, then decide what should be done. I'm postmenopausal and was told my cyst could likely sit there for years !!! At my age though, I opted to have it removed..

Good luck and quit making yourself nuts.. and go read those articles !!!

Sandy

[AnnKr]

I am in a similar situation as you and would like to share doctor experiences.  I am having a second opinion on Monday.  Long story short, (I have posted before) but I had a regular gyn exam last September and the doctor thought I had a fibroid and a possible cyst.  I was sent for a transvaginal ultrasound.  She called and told me that I did have a fibroid and a cyst that was about 5.2cms.  She told me to get a Ca-125 done and it was normal.  She suggested since it was a complex cyst that I have surgery.  I wasn't comfortable with that since my cousin is a pathlogist and I had the report sent to him and he said that he didn't feel there was a need for surgery at that time. I then had a second opinion and that doctor told me to wait two cycles.  I did and went for another ulstrasound.  The cyst shrunk to 2.4cms.  I was thrilled.  However, I just went to my regular doctor (now about eleven months later) and while I was there, I asked for a ca-125.  She agreed (which gyn's won't do now a days but since she is a family doctor, she agreed.)  She called and said it was elevated to 50 and I should talk to my gyn.  The family doc called in for me to have another ultrasound since it was a Friday and I was in panic mode.  It said that there was no change from last year.  It was still at 2.4cms.  (And that it had shrunk from the original ultrasound last September.)  Now I go on Monday to my gyn... and I am so scared. Since it has not gotten grown and has stayed the same size.... is that good??  I think so but am not sure.

Thanks for any help.

Ann

[worrynurse]

When the cyst was 6cm I could "feel" them as I had abdominal pain and aching ovaries...since my US revealing that they had shrunk Around that time I could not feel them...Since then though...Im thinking they have grown again as I can now "feel them". Im really not concerned about It being ovarian cancer any longer...Now my worry is my low platelet counts!
Donna

[Sandymac]

That's fairly small. I don't know if you could really "feel" them . Maybe, as you say, you have more awareness now.The fact that they are shrinking is a very good sign .Try not to worry and I wouldn't concern myself that much with the CA-125. The National Cancer Society does not even recommend it as a screening tool. At the top right of this page in the "Health Pages" there is a section from the ACS regarding the CA-125.. also a lot of information on the cysts.. Take a peek at both articles.

Take care,
Sandy

[worrynurse]

Im 42, The cysts ended up shrinking from 6cm to currently 2.5 cm...I will be doing a follow-up in the middle of my next cycle. I kinda made my Dr re-test my Ca-125 and it is now 12!!!Yeah..BUT now i have had two consecutive low platelet results (not very low..110,000 and 132,000) now my doc is sending me to hematologist.
    So when the cyst was 6cm we were thinking we should remove them, now that they shrunk I think I have avoided that. Im almost certain that they have returned or gotten larger again b/c of the awareness of my ovaries...like someone is gently squeezing them.

A little worried again!
Donna

[Sandymac]

Meant to mention ... 95% or ALL cysts are benign !!!

[Sandymac]

Were the cysts removed? Are they monitoring them? You may want to check the "Health Pages" at the top right of this page. There is a lot of information about cysts. As you know, the CA-125 isn't all that reliable with premenopausal women. Your profile doesn't indicate your age.. And... when you say "large" how large are they? If they are over 5cm, they usually opt for laparoscopy or laparotomy to remove.. but if smaller, they sometimes choose to just monitor them every 3-4 months.

Please keep us posted and try not to worry..


Sandy