Aa
Large Cyst Elevated CA-125
Went to my gyn a week ago for a regular checkup. Upon examination she siad that my uterus felt enlarged and like a 14-16 week pregnancy. She had me come back for an internal ultrasound. They found a 12 cm x 12 cm cyst. It was large enough that it was blocking my ovaries and they couldn't see much. They said it was pushing up my uterus. At first they said it was looked totally fluid filled and upon internal exam it was smooth. Then they sent me for a CA-125 test which wound up coming back at 294! I met with they gyn on Monday and he ordered a CAT scan which I am having today and now he is saying that there may be a about a 3 cm solid piece inside the cyst but he is not sure. My husband asked if it could be the ovary and he said yes. He has referred me out to a gyn oncologist in case it is cancer. I meet with her tomorrow.
I am 39 years old and have a 7 and almost 3 year old. There is no family history of ovarian/breast cancer. Now they have me really scared! I didn't have any major symptoms prior to finding this although now my back hurts and I am slightly uncomfortable and at times look pregnant. Any similar stories/information would be helpful. I lost my dad a year ago to lung cancer and I'm afraid that this might send my mom over the edge!
Thanks!
I am 39 years old and have a 7 and almost 3 year old. There is no family history of ovarian/breast cancer. Now they have me really scared! I didn't have any major symptoms prior to finding this although now my back hurts and I am slightly uncomfortable and at times look pregnant. Any similar stories/information would be helpful. I lost my dad a year ago to lung cancer and I'm afraid that this might send my mom over the edge!
Thanks!
HI
I am also awaiting surgery for cyst removal. I hope all goes well for you and I would love to know how you got on.
I am also awaiting surgery for cyst removal. I hope all goes well for you and I would love to know how you got on.
Wow.. that is a large cyst.. Sounds like you're in good hands though! Keep us posted.
Sandy
Sandy
Well the gyn/onc feels that it is benign but of course they won't know until they go in there. She feels it is a mucinous cyst. It is much bigger than initially thought. According to the CAT scan it is 18cmx18cmx16cm! I am waiting on a call for a surgery date. This doctor is hoping to take just the cyst and whatever ovary it is attached to, have pathology test it while I am still on the table and if it is cancer she will do a full hysterectomy. Unfortunately due to the size of the cyst it will have to be a laparotomy. Thanks again for giving me a place to vent!
Thank you so much for all of your responses. I am anxious to see the gyn/ocn opinion today and will definitely keep you updated!
Hi
As Sandy & Heidi ay try not to worry. Yes that is easier said than done, but you are being referred to the right people.
I had very similar to you and have just had surgery (2nd June). I went to doctors with back/high tummy aches and through scan discovered I had cysts on ovaries. One on right was very large (17x15x11cm). I was referred to oncologist/gynae and my CA125 was raised every time taken. The CA125 can be raised for lots of reasons it is unreliable but it is what they have (this is what the consultant told me).
I understand what you are going through (as will so many on here - there is so much support) I have no family history either and was in complete shock. It all happened very quickly and because of my age (42) and I have finished my family and to be on the safe side I have had everything out. As to what they recommend for you I imagine it will depend on CT scan (I didn't have one it was decided to remove uterus/ovaries/cervix/appenix/omentum anyway - don't panic - they will discuss everything with you and the girl in the next bed to me just had a huge cyst removed only).
I can only say, the gynae/oncologist route is a good one. I am on the hysterectomy forum (hysterectomy ***.) and my going down this route has been quickest and they explain so much, compared to other ladies on site. I was given a specialist nurse to contact and that is brilliant.
Again, I know how all this must seem, I am still on the road down it myself and can't quite believe it myself.
Let us know how you get on and keep asking questions and seeking support. It is scary, but speaking to the consultant and specialist team will help.
Take Care and keep us updated
sarahx
As Sandy & Heidi ay try not to worry. Yes that is easier said than done, but you are being referred to the right people.
I had very similar to you and have just had surgery (2nd June). I went to doctors with back/high tummy aches and through scan discovered I had cysts on ovaries. One on right was very large (17x15x11cm). I was referred to oncologist/gynae and my CA125 was raised every time taken. The CA125 can be raised for lots of reasons it is unreliable but it is what they have (this is what the consultant told me).
I understand what you are going through (as will so many on here - there is so much support) I have no family history either and was in complete shock. It all happened very quickly and because of my age (42) and I have finished my family and to be on the safe side I have had everything out. As to what they recommend for you I imagine it will depend on CT scan (I didn't have one it was decided to remove uterus/ovaries/cervix/appenix/omentum anyway - don't panic - they will discuss everything with you and the girl in the next bed to me just had a huge cyst removed only).
I can only say, the gynae/oncologist route is a good one. I am on the hysterectomy forum (hysterectomy ***.) and my going down this route has been quickest and they explain so much, compared to other ladies on site. I was given a specialist nurse to contact and that is brilliant.
Again, I know how all this must seem, I am still on the road down it myself and can't quite believe it myself.
Let us know how you get on and keep asking questions and seeking support. It is scary, but speaking to the consultant and specialist team will help.
Take Care and keep us updated
sarahx
Hi,
Have to agree with everything Heidi said.. Try not to worry and let us know..
Sandy
Have to agree with everything Heidi said.. Try not to worry and let us know..
Sandy
It is a very good thing that they have referred you to a Gyn/Onc. I had the same issues a couple of years ago and I know how scared you are!!! A Gyn/Onc has much more experience and education in this area and will have some good advice for you. Try not to worry too much (I know - it sounds good tho ) An elevated CA125 test does not automatically mean OVCA. Several factors can elevate your #'s. Keep us updated and know we are thinking about you!!
Heidi
Heidi
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