Elevated CA125

[springyes]

Hi I not sure if a reading of 80 is really high or not but it has me terrified.  They told me I had a bleeding 5 cm cyst on my left ovary and a small normal cyst on my right.  My gyno said he was going to remove it but I asked to go to the big city hospital to a onc/gyno.  He said no problem, I hate to go so far away from my family should I  just let him do it in my own hometown? I am really freaking out now that I know the results of the CA test. I feel absolutely depressed and can't help it.

[springyes]

Thanks Sharon you are soo right, your a wonderful, loving person that I can tell.  It's easy to tell you have been there and done that and they really should have gave you the T-shirt.  No one really understands the fear until you have been there.  Thanks so much

[Sharon2714]

i had serous borderline tumors 1C .. optimum surgical debulking by an experienced and educated gyn/onc and NO need for chemo
yeap i had the ca-125 and like yours it was only slightly elevated (126) .. lol now it is a 4 .. i knew women in the thousands and there are a few on here ... i am one of the lucky ones that the CA-125 is a good indicator but having said that ... ur elevated ca-125 only has meaning post op .. its a "look back" .. if u have ovca and (i earnestly pray that u do NOT) ... then now they know its a good marker for u .. equally i know many women with other benign yet extremely painful conditions who had ca-125 levels right there with mine .. until an accurate screening test ever comes up its all we have at the moment .. dont fret the numbers .. until they do the frozen section while u are on the table, nobody can say for sure and getting worried about it now will not for one minute change ur outcome .. it just upsets u and ur loved ones ... all of us can attest a big "been there done that" to this period of pre surgery ... curious they never gave me a t-shirt
what matters the most is .. u use an experienced/educated gyn/onc even if it means a bit of a drive because all of the stories of bad outcomes i have known are from ladies who trusted their local gyn surgeon and something went wrong .. i have 2 women who are very dear to me that had NUMEROUS repeat surgeries and more pain than i can even fathom .. i trust my local hotshot gyn with my daughters routine health but if anything serious ever developes (and i so do pray not) .. it will be off to the medical university for them :)
u have recieved some of the best advice i have ever seen from people who would really prefer not to have experience in ovca/cysts/cancer in loved ones ...
a wise woman told me early on .... u sound terrified but there is no need to fear as fear cannot change what the doctor finds .. i will hold u in prayer .. please keep the forum posted on ur decisions .. i bet one or two caring loving ladies will even hold u in prayer and a hug :)
love
sharon

[springyes]

Did they give you a CA125 test before your surgery?

[Sharon2714]

good luck and god bless .. ofr my surgery, i went to a university hosp 3 hours away to ensure i had the best surgeon in the area .. like u i was unsure if it even was ovca until the pathology after it was taken out .. there were many fantastic gyn surgeons in my area but the gyn/onc at the teaching hospy was the right choice .. when i go for follow ups i just make a day of it and bring along a friend (usually one of my kids) and go see something interesting or have a nice lunch .. god bless u darlin, i say that to every post i read even if i dont comment
love sharon

[hopeshell]

I had both a CT and MRI pre-diagnosis.  My gyn/onc prefers MRI to other scans.  However, the CT will still show the tumor size, consistency and any other tumor sites or enlarged nodes.  I hope all goes well.

[springyes]

Thank you very much for all the advice I appreciate it.  I am going for a ct scan from my gastroentologist because orginial the gyno said my cysts were too small to be causing this amount of stomach upset so I went to gastro dr who is sending me for the ct scan.  Is the ct scan as good as the MRI?  I then had another TVU and that's when he said it had grown to 5 cm and gave me the CA125 which should have been done right from the start.  He said he would remove it but I have became nervous now.

[kcd86]

It is very stressfull to have this hanging over your head not knowing what is going on or what the next step is. This site has some very knowledgeable people on it to guide you .

A transvaginal ultrasound (TV) is the most valuable diagnostic study in the evaluation of an adnexal or pelvic mass/suspicious cysts.  Cysts, hemorrhagic cysts(bleeding), endometriomas, and dermoids have a high predictive diagnosis via TV ultrasound.

The blood test CA-125 is a test used by Dr's as a guide to determine if you have the most common form of ovarian cancer, approximately 80% of all ovarian cancers are epitheal ovarian cancer which is cancer of the cells on the surface of your ovary. Please keep in mind that CA-125 can be elevated if your menstruating and some other cuases of inflamation..
Unfortunately with any type of suspected ovarian mass/tumor/ suspicious cyst(s) surgery will be the only way for the Dr's too make a definitive Dx. It is NOT recommended to biopsy any ovarian mass/tumor/suspicious cyst as it can rupture and seed the pelvis with cancer cells if that what it turns out to be.  Please make sure you have your blood drawn for the following blood tests,Inhibin A&B, CA125 and CEA so at the very least you have baseline blood work.
Since there is some suspicion based on your TV-sonogram I would immediately find a good GYN/Oncologist surgeon. I am not suggesting what you have is cancer but studies have shown that treatment of ovarian cancer by nongynecologic oncologists and by low volume surgeons is associated with suboptimal surgical management. I would reccomend going to a large tiertiary hopsital where they see large volumes of patients.  This is not to make you worry even more but to make sure that the Dr who treats you has vast experience with diagnosing and treating various types of GYN / Onc issues if that is what it turns out to be. If the Dr wants to remove the cyst/mass via laprascopic procedure PLEASE make sure they have much experience with removing these INTACT! All too often I read posts from patients who say their Dr thought it was a cyst and removed it haphazardly causing a rupture and seeding of the pelvis with cancer cells, only to be found on pathology post removal.
Next: From experience I would be asking for an MRI of the abdomen/pelvis ,MRI's are very precise when read by a Radiologist that specializes in GYN/ONC, My wife went to a radiology practice that does all types of MRI's and the Radiologist read her MRI as a fibroid. I then took her to Sloan Kettering in NYC to see a GYN/ONC surgeon Dr Carol Brown who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
The best advice you see all over these posts is you have to be your own advocate, be aggresive and stay on top of your phycicians. Get copies of all your tests/results as you are entitled to them. Post with any other questions you have this site has some very knowledgeable people on it. I wish you all the best and willing to help guide you thru this
Kevin
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[springyes]

Would the normal gyno be able to tell what kind of cyst it was from the ultra sound and tvu.  He says it hemorrhagic then says maybe I have endo.  Wouldn't I know if I had endo before this?  Seems to me like he's guessing and it's making me nervous.  I asked him not to send me for surgery until after my vacation on the second week in August but now I thinking I shouldn't have said that because I am very nervous about waiting.  I have been going to him since Feb and he now just sent me for a ca 125 he should have done that months ago.  Thanks for your opinion Marie you are right as much as I don't want to go 11/2 hours away from my family.

[marie3B]

Better safe than sorry.  I agree with your first instinct to go to the big hospital and use the more skilled gyne/onc.  Many benign problems can cause the elevation, but in case there is a malignacy I would want the best chance possible to get it out safely.  That comes with the training a gyne/onc has.  Good luck to you and let us know how you are.  Marie