Increase in ca125 markers, but scan does not show any tumours, is anyone in a similar position?

[Poppy2212]

I was diagnosed 4oc in March 2012, had chemo then surgery then chemo/Avastin and finally Avastin on its own. Just had last one but unfortunately ca markers have started to go up usually around 10 but then 15, 27 and yesterday 37. Luckily my scan was clear so no tumours detected but my doctor says it probably means the cancer is coming back :-(. There is an outside chance it could be something else causing the rise but not holding my breathe. Anyone had experience of this?

[Hidden]

Hi Poppy ... I'm afraid that I don't know the answers and, I suspect, neither do your doctors. You already know it could be raised for a lot of reasons, not just Ovarian. However, CT scans don't pick up microscopic disease up and small changes can't be detected. I really hope the marker goes down again and that's not outside the realms of possibility. Meanwhile, I'm sending lots of love to you... T xx

[Poppy2212 in reply to Hidden]

I don't know though. What things can cause increase in ca markers? It's all a bit vague.

[Hidden]

Hi Poppy ..

Endometriosis, fibroids, and other conditions which cause inflammation .. CA125 is an inflammation marker and not a cancer marker though cancer can cause inflammation. I have progressive disease and late stage but my CA125 is low normal. It was whilst I had endometriosis and fibroids. When I had a 17lb cystadenoma, it was normal too . T xx

[Poppy2212]

Hello again Tina I am sorry, I really hope all goes ok with that. It's such a difficult disease to live with. I know I am lucky to be here today but it's like being on a roller coaster ride. I must try to be patient and enjoy today. Hard though isn't it?

[Daughter1]

Hi, my mum was diagnosed in 2012 also, stage 3. Went through the same treatment and before Christmas after a consistent rising level in CA125 (11-50's) was told something similar. The onc said that as long as mum felt ok that she should try not to worry and that CA125 alone was not enough to suggest recurrence. Mum did have some pains but again these have not always been put down to the cancer.

Mum requested a scan, which after some analysis they saw 2 slightly enlarged lymph nodes. Again mum was told this may not be anything to worry about, but she was keen for a second opinion so went to see another onc in London who did a PET scan which did show the cancer in more than 2 lymph nodes.

I'm not sure if this is much help, but from what mum has said she at least knows where she stands now, the not knowing has been very hard and I think she was pleased to have gotten a second opinion. She will have another scan in a month or so and they will determine treatment from there.

I really hope this may be of some help, I read a lot on here but don't write often. Fingers crossed your rising CA125 is nothing sinister xx

[Hidden]

Yes, I had a similar series of rises to you and a similar scan experience to Daughter1's mum. Have just completed second line treatment. Keeping my fingers crossed for you one way or the other. We certainly learn how to live with anxiety, don't we! xxxx

[Poppy2212]

Thank you so much for your replies, my onc is suggesting I go on a trial for tamoxifen v a new drug don't know the name but will have to look into it. It's on the ovacome website. She is also trying to set up a trial for an immunotherapy vaccine but we are waiting on that. Another blood test in 4 weeks. Fingers crossed.

[JacJac]

Hi I am in exactly the same position with the rising markers. Have been told I could have surgery / surgery and chemo or do nothing. Non of the consultants I have seen will commit to a decision. tell me that it is mine alone to make. Have not been offered Avastin! They (the oncs) believe it is the cancer as they think the rising ca125 is a good indicator for me....However it could be something else as well as a rising CA125 can be linked to many other things and I know for some ladies it is not an indicator at all.......I wish you well JacJac x

[Poppy2212 in reply to JacJac]

Yes you too. It is difficult and very frustrating. Let's hope that there is a breakthrough in research soon.

[HerThing]

Hi Poppy

I think the CA125 marker is a bit of a double edged sword. I also think there are a lot of people in a similar position with clear scans but rising markers. It's a dilemma to know what to do, especially if you're feeling well. I don't think there is a right or wrong answer as each case is individual. In my wife Angie's situation the tables are turned. Residual disease from the surgery is very apparent on her scans yet the CA125 is on a downward trend. She feels well and is currently not receiving any treatment. In fact she's decided to go back to work and make the most of feeling well.

However things develop for you, and don't forget that the markers can and do fluctuate for various reasons, I wish you all the very best. I have heard some very positive things about the use of Tamoxifen and also encouraging research concerning immunotherapy vaccines. Do keep us informed about how you get on with these if you decide to give them a try. Hopefully you won't need to of course and the markers turn out to be just a blip.

Andy x

[SueSchultz]

I was diagnosed 3C, was treated with carbo, taxol, and later they added gemzar. After the all clear, 13 months later I had an elevated CA125. I was back in chemo before the results if my PET scan came back in- had a little spot that never changed. They kept me in chemo until the CA125 went back down. Still have the spot.