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High CA125, mass found on left ovary and scared!

Posts: 6
Joined: Mar 2013
I am 41 years old.  I had blood tests approximately three months ago, which revealed a CA125 of 33. I made an appointment with my gyno, who repeated the CA125 and now is at 127.  I had a vaginal ultrasound the following week, which revealed a cyst inside my left ovary.  A doppler was performed and no blood flow to the cyst was revealed.  I have an appointment with MD Anderson and am terrified.  Neither of my parents had cancer (father died of massive heart attack at 53, mother died of end-stage renal disease at 64).  
I have a history of endometriosis, with numerous laparoscopic surgeries to assist, as well as Lupron Depot treatments following. I gave birth to twins ten years ago.
I am terrified...absolutely terrified.
seatown's picture
Posts: 262
Joined: Sep 2012

I understand your terror, but for your own and your family's sake please try to remain calm until you have something more definitive from your doctors. FWIW, when my primary peritoneal cancer [very similar to ovarian cancer; treatment is the same] was diagnosed last summer, my CA 125 number was 2,738. It doesn't sound to me like you have many of the symptoms which cause patients with ovarian and related cancers to seek treatment. Please continue to share your concerns and news here.  Best of luck to you and your family.

Posts: 6
Joined: Mar 2013

Thank you for your response. My appendix ruptured in December 1997.  I was in the hospital for over a month, and was sent home on home health for six months. I did not have a cycle after that for the six months I was on home health and my doctor transferred me to a gyno for review. They found a large mass (the size of a grapefruit) on my right ovary. They went in laproscopic and found I had endometriosis. The doctors felt because my appendix ruptured, this caused my organs to shut down as a defense mechanism due to the gangrene and peritonitis, which in turn caused my cycle to retract back through causing the massive blood-filled cyst. I was treated with Lupron for six months, with a repeat laparoscopic surgery, and an additional three rounds of Lupron (for good measure). my husband and I married in 1999 at the instruction of our doctor requesting to push our wedding up if we wanted to attempt at having children. It was difficult getting pregnant, and ended up using an amazing doctor in Houston. I gave birth to twins in December 2002.  My husband and I did not use birth control and have not conceived after the twins were born. I have had migraines for many years, cleared with CT scans, MRI's and heart ultrasounds. my periods began to get heavy and my doctor put me on the Mirena IUD three years ago. After about two years, the Mirena started to come out, so my doctor removed it. They found a cyst on my left ovary and he then put me on Loestrin 24 tab FE to see if it would shrink. It did shrink so he felt it was a typical cyst. I got off of the birth control about a year ago. Six months ago, my employer did annual screening where my CA125 was 42 (wrong number listed above). The lab noted I needed to contact my physician but stated it was not an indication if cancer.  I contacted my gyno and he performed another CA125, which came back at 127.   He then performed an ultrasound with doppler showing NO bloodflow to the mass the following week (last week) and suggested I see MD Anderson for additional testing. I have my first appointment tomorrow morning. 

lovesanimals's picture
Posts: 1364
Joined: Sep 2011

I understand your fears and anxiety.  The waiting and not knowing can be torture!  However, from what I understand, endometriosis is one of those conditions that can cause an elevated CA 125. Please let us know the outcome of your additional testing.  I'm keeping my fingers and toes crossed that you do not have cancer!


Posts: 6
Joined: Mar 2013

Thank you so much for your kind words! I will update tomorrow. 

wholfmeister's picture
Posts: 315
Joined: Dec 2012

Try not to panic.  Your symptoms could be related to lots of things, not just ovarian cancer.  You are going to an excellent place for care.  I know things don't always seem to be in our control, but if possible, ask to be seen by a gynocologist-oncologist.  You have been through so much already, and you must have a fighting spirit.  That is a positive!!  Try to just breathe and take it one step at a time.  We are all here, hoping and praying for you!

Posts: 6
Joined: Mar 2013

You have no idea how much it means to have your thoughts and prayers. All of you...it means a lot.

Glad to be done's picture
Glad to be done
Posts: 569
Joined: Jul 2012

Hi.  Just seeing this today and I am wondering how you made out with your visit to MD Anderson.  I have a friend who was on the mirana and having awful bloating.  She has had a couple episodes of pain where she entertained the idea of going to the E R but didn't.  She was also told by her midwife she had a cyst on her ovary and she should see a gyno.  She did and had the mirana removed oh about a month ago or so.  Cyst was still there but had not grown at all.  She just had her follow up and the cyst is gone and all looks clear. 

I hope your situation has the same outcome.  Please let us know how you are doing...


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