Anyone with elevated CA 125 NOT have cancer?

[Hope3053]

I have been having some issues.   I am a breast and thyroid cancer survivor (or at least I hope I am...never liked that word).  Over the last 6 months, I was feeling bloated, etc. and went to my primary care doctor.    She did an internal and said my uterus was enlarged -- had ultrasound and pelvic MRI done.    Results showed thickened endometrium, adenomomyosis, enlarged uterus, fiborids, etc. and a possible polyp.   Had an endometrial biopsy (negative), had hysteroscopy and polyp removal and D&C.  All OK.    MRI showed area on right ovary, possible fibroma, that needed follow-up in 3 months.   Second MRI done and no changes...although now it stays there is same type of fibrous tissue on left ovary as well -- apparently it was also there for first MRI (because I asked) but was not mentioned.    The second MRI stated that what was seen was most likely normal ovarian stroma, but bilateral fibrous tumors could not be excluded.   Gyn surgeon recommended 6 month follow with another ultrasound.

I was not happy with this -- why would I have another ultrasound, when only the MRIs showed the fibrous areas of the ovary?   So I pushed and ended up getting a CA 125 test done.    It came back mildly elevated at 57 and gyn surgeon recommended removal of ovaries and said she thought I was low enough risk that she could safely do the surgery.

I asked for a referreal to a gyn onc (seconded by my breast ongologist) and have an appt. next week.   Needless to say, I am really nervous having been bitten twice already.    My BRCA status is negative by the way, so apparently my risk for ovarian cancer is not considered to be any greater because of that.

I have been told that ca 125 is not reliable or diagnostic for cancer, especially at my level, but all of a sudden I went from waiting another six months to a referral to a gyn onc.

Has anyone had an elevated ca 125 and NOT had cancer?   It would make me feel better to know that.    I was also right in the middle of the period when the test was run and I have read that that can affect results as well.

Anyway, any encouragement would be welcome.    I know that I have to wait for surgical removal to get my real answer.   Also I need to decide if I am just takiing ovaries or the whole other mess as well.

Thanks.

[fungirl1011]

Hi and I am so sorry you are going through this.  It is possible to have a high CA125 and not have cancer.  If you are pre-menopausal then a CA125 in not an accurate detector in ovarian cancer.  I think seeing a gynecologist/oncologist is the best think for you to do.  They see these issues everyday and can tell you better what is going on.  Good luck!!

[kcd86]

One more note: A CA 125 of 57, I would not be too concerned on that# concidering you were having your period, but certainly warrants further work up. Keep in mind CA125 levels can be in the hundreds and in the thousands for ovarian cancer.
All the best
Kevin

[kcd86]

Hi, I am an RN and my wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010. Tests like sonograms, Cat scans and MRI's along with blood tests like CA125, Inhibin A&B, MIS and CEA are just used as a guides for the Dr's to help assist in making a diagnoses(Dx). The test you describe 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..
There are other types of ovarian cancer that are hormone driven and depending which form a person has there will be excess symptoms of that specific hormone. This is the type my wife was Dx with granulosa cell ca. These group type are called sex cord -stromal tumors. These type of tumors have specific markes that the Dr's use just like ca-125 to aide in their dx of epitheal ovarian ca. They are Inhibin A&B and MIS. Please keep in mind if and only if you have a dx of these form of tumors there is a missconception that these tumors are always benign, which is completely false> They are just slow growing tumors as opposed to epitheal.
Unfortunately with any type of suspected ovarian mass/tumor surgery will be the only way for the Dr's too make a definitive Dx. It is NOT recommended to biopsy any ovarian mass as it will rupture and seed the pelvis with cancer cells if that what it turns out to be.
Please make sure they drew her blood for the following blood tests,Inhibin A&B, 2nd-CA125 and CEA so at the very least you have baseline blood work.
Since there is  suspicion based on your description I would immediately find a good GYN/Oncologist surgeon. 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: 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. This is not to scare you but to show you that these type of specialists just do this day in a day out.
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
Kevin