Hysterectomy scheduled after 2 years

[Kim1031]

It has been just over 2 years since I last posted a question to you. I was originally diagnosed with Endometriosis with Ascities. My CA125 has gradually went up, more fluid build up, and several cysts on both ovaries. I did go through Lupron injections to see if that would halt things without any luck. Now my CT and ultra sounds are showing a complex cyst on my left ovary with some changes to the ovary, as well as fibroids. My doctor is now wanting to do surgery to remove everything. I did all the tests, medicines, without any luck. He seemed more concerned now than ever and is pushing to do this ASAP. Unlike before when he didn't think it was a good idea since I am only 37 now, 35 when I started seeing him. I am a little more worried than I thought I would be since this is a doctor who doesn't believe in doing a surgery unless there is true reason for it. My questions are am I going to feel the same way I did while I was on the Lupron, is endo w/ ascities really that rare, and should I be concerned now I have a complex cyst with changes to the ovary? He didn't elaborate on it as if he didn't want to alarm me yet said he felt we needed to do this as soon as we could. Thank you so much for your time and information. It really helps hearing from some one else who is trained in these things.

[Kim1031]

Thank you so much for the information. Over the last 2 years I have had CT, MRI, and several blood tests to see if conservative treatment would work. I also had exploratory surgery 2 years ago which he found endo with the ascities still present, and large cysts, but he didn't remove anything at the time. I have been working with him and a GI specialist to make sure no stones are left unturned so to speak. Both of my doctors feel the ascities is of concern because it would have went down or away at some point if it were due to a cyst or idiopathic. I was told my CA125 test was done to have a baseline then to follow up on it every year because it isn't the best test and no other one out there to detect OVC early. With my symptoms getting worse and the changes they found on my ovary, a complete removal of everything is the best solution for me at this time. He said it was the only way to DX OVC and my quality of life would be better as well. I do have time to do this he said since my progression has been slow but waiting to long isn't recommended any more either. I do have copies of all my tests and have choices now to make on Loyola or UIC in Chicago if i feel the specialist out there best fit my needs. I hope your wife is doing good and thank you again.
Kim

[kcd86]

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 this has been ongoing for you and TV showed a complex cysts, warrants a very through work up to rule out any other potential issues.
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). A transvaginal ultrasound (TV) is the most valuable diagnostic study in the evaluation of an adnexal or pelvic mass/suspicious cysts.  
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. Post with any other questions you have this site has some very knowledgeable people on it. I wish you all the best
Kevin