You can't hang your hat on a CA-125. A CA125 is used as a guide only not a tool for a diagnoses or weather to have further studies or not. CA-125 blood test is for the most common form of OVCA epithieal. It will not help with sex -cord cancers of the ovary. My wife had a CA-125 reading of 0.
Just the mere fact that what they are seeing is soloid and it has vascularity feeding it warrants a refferal to the gyn/oncologist.
Well I'm really sorry to hear about your wife. My doctor ordered the CA125 test for me....he also told me he "really doubts" that I have ovca because the U/S results aren't "suggestive" of it. However, he is erring on the side of caution as he should. If my CA125 comes back elevated, he will immediately send me to a GYN/ONC. Thanks for all your feedback!
As my first post said the most common form of Ovarian cancer is epithieal ovarian cancer which are cells on the surface of the ovary epithieal cell all over our body always sluff off this is why this form of ovca is usually found in advanced stages.
My wife's was from within the ovary Granulosa cell cancer(GC), this is a slow growing cancer as opposed to the other form. The bad thing about this is almost all chemos are for fast growing cells and GC is not. It is also rare and there are not alot of studies ongoing since the total # of patients with it are small
Unfourtunately, I can't get an appt with a GYN/ONC until I see my regular GYN because I have to be referred by him. Any MRI, blood tests, etc would be conducted by oncologist....I am only going to my GYN for a pelvic exam, pap, and a referral. Was your wife's mass found ON her ovary or IN it?
It is good that you are in the cleveland clinic. I would suggest that you go to a gyn/oncologist. I am sure the gyn is good but as you said this will need to be adressed and the gyn/onc is the person to do that. I also would be pushing for a MRI which your gyn/onc can recommend one that specilizes in gyn/onc.
My wife had a 3cm solid mass also on her right adnexa which was discovered on exam. Her first MRI was read as a fibroid by a non gyn/onc radiologist. The gyn/onc surgeon had a 2nd MRI done and read by a radiologist who just reads gyn/omc MRI and he read it right on the money.
Well, that was my exact U/S report. My doctor always forwards my test results straight from the person who gave them. So getting a copy of my exact report would be the same thing. As of now, he has me seeing a GYN on Jan 12th.....which I thought was far away, but he said he didn't think it was serious enough to warrant a visit ASAP. He doesn't know for sure what the doctor will do at that visit........I am having a pelvic exam and a pap smear, and I'm sure they will take blood. My doctor is at cleveland clinic, and he has been my doctor for a long time....so I trust what he says. I think if he was super worried, he would have sent me asap for a GYN visit. However, I have to get a referral for a GYN/ONC from my gynecologist...so this will probably happen at my appt on the 12th. I have already come to terms with the fact that they are going to have to take my ovary out, since whatever is there is inside of it.
If you don't mind me asking, did your wife have an U/S and if so, were her results similar to mine? Whatever I have is small, only 2cm, so I'm hoping if it is cancer, we have caught it early enough. My left ovary is fine, so that's a good sign, and I also have hardly any free fluid in my pelvis, and my Dr said a little bit is normal. Thanks for the answer!
I am sorry you have to go threw this it is very stressfull to have this hanging over your head. Keep in mind most cysts are benign!! Since your transvaginal sonogram(TV) showed a soloid mass with vascularity warrants a very thourough work up to rule out any other potential issues.
My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010 and I know what it feels like to not know what the next step is. Here is a quick overview.
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). A transvaginal ultrasound (TV) is the most valuable diagnostic study in the evaluation of an adnexal or pelvic mass/suspicious cysts. Cysts, hemorrhagic cysts, endometriomas, and dermoids have a high predictive diagnosis via TV ultrasound. Get a copy of your TV(you are entitled to it) and post the exact results
An MRI is usually the next test that should be given as they are more precise when read by the right radiologist.
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..
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/ 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.
Kevin
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