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CA125 doubled and not sure whats in CTscan yet

This feels so long winded to type but here goes...Dec2010, chronic pain thought appendix, Sent for US scan and found on right ovary a cyst of 7cm and CA125 was 27.5. Waited until 4 months (may) for follow up US Scan and transvaginal scan Cyst halved but about 3 or more extra and some endometrial. Gyny said thought it might be endometriosis and would I be ok with going on mini pill (had hysterectomy in 1999 leaving only R/Ovary) to be on safe side do CA125 again before being signed off and results came back as 61. Called last Wednesday from CT dept for a CTscan on the Friday...Monday afternoon called by the Gyny Onc nurse...because CA is doubled and although not given me all info from scan have been put on priority list (4/6 weeks or sooner) and told I have to have ovary etc removed. Have a gyny appointment in 2 weeks....telling myself it will be ok but also not so sure...been going through this for 7 months now, just wondering if my head is running away with me to think the worst at times?

8 Replies

sorry meant to add...GO nurse did called it a complex mass...so much going on have to take time when repeating it in order :(


Hi Ally,

Sorry you're having such a frightening time! There is a question and answer at en.allexperts.com/q/Gynecol... that might help you understand what is happening, and why.

I think the important thing is to get them to deal with it as soon as possible to alleviate your stress and prevent any problem getting worse.

How old are you?

Is your GP involved - they can be v helpful with explanations if nothing else.

Very best wishes.

Isadora xx


I'm 46 Isadora.


My troubles went unnoticed for some three years, and did not appear to be those usually associated with ovarian cancer. I was tired all the time, and needed to visit the lavatory frequently. It was first thought I was trying to have time off work, when nothing was wrong, then maybe I had a bladder weakness. Finally I was sent for an untra sound scan where two tumours were found. Things then moved very quickly and I had a hysterectomy within nine days. There is an old saying that when you feel you have a genuine issue and no-one listens you have to "hang in there and be a blasted nuisance". I hung in for too long, realising I was not my usual self but of course had no idea it could be anything so serious as cancer. I now have my CA 125 checked annually but had to specifically request it. Good luck, Olive x


I'm sorry to hear you're having such a worrying time. What was your first ovary removed for? I would say go and ask more questions, don't worry if you think you are making a nuisance of yourself! Better to tackle anything sooner rather than later. It sounds as if there may be something that needs investigating, especially if your CA125 levels are up. Mind you, that is not TOO high. However, you won't want to take any chances. I had to go back and forth for 3 years to get anything done and I was feeling rougher and rougher during that time. It was all put down to the perimenopause. I've been nearly 9 years since my op and had borderline OC in both ovaries and the omentum. Speak to the CNS about the possibilities and see if you can get an earlier appointment. I was operated on within 7 days after seeing my gynae/onc specialist, after having a US scan, trans-V scan and CA125 (which was 545)

Good luck


I agree with everyone else you are doing the right thing and a CA125 of 61 is relatively low mine has been 2400


Wendy the 1st was removed for a cyst...do have the op report with histology from 12 years ago somewhere. Hubby is going to find it for me. I've forgotten now what was wrong with that so need reminding. He thought that might of been OC back then. My main head is pretty sure nothing is too wrong but it's that niggling feeling in the back of it. Trying to find the answers to a question that can't be answered immediately is frustrating though.


I am one of the support line nurses at Ovacome and if you would like to give us a ring to talk things through please do feel free to do so. 08453710554 If we can't back to you immediately we will endeavour to get back to you within 48hours. I am sorry to hear about the very difficult time you are having. Being in limbo is very hard. It might be worth phoning reguarly to check about any last minute cancellations as it is important that they will have had a chance to review the scan before you are seen in two weeks time. I do hope that you don't have to wait too long before they know what is happening

Best Wishes


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