CA 125 jumped from 10 to 27 has anyone experienced fluctuations for other reasons, or does it always spiral upwards?

[caro]

Hello everybody, I follow all of you closely on behalf of a dear friend diagnosed last year, she had 6 cycles of chemo for stage 3c cancer and miraculously has had v low CA 125 at each 3 month checks ever since. It has stayed at 10 for over a year, but results of last week's test at the Marsden today shows it's up to 27..she's going back next week to see if it's gone down. So my question is: Does it ever go down? ie has anyone else experience small fluctuations, or is there nearly always an inexorable rise? Thoughts on this would be greatly appreciated. Thank you. Caroline X

[charlie12]

Hi Caroline

I'm so sorry that your friend is going through this, but she is fortunate to have you though. Also the Marsden , which is highly regarded and known around the world, seems to be keeping her under close review which is excellent.

My consultant always says that "anything under 35 is normal". I'm really not sure of the clinical implications of fluctuations between that range i.e. 0 to 35 , sorry. However I have also been told that CA125 can fluctuate because of inflammation. My own wan 69, and then fell to 48 before the operation. It transpired that I had a borderline cancer and I have been fine since.

Sorry not to have been of more help and I so hope that the situation resolves soon and that her remission continues for many many years.

Love

Charlie xxx

[caro]

Thanks Charlie, it really helps just hearing from people, which is why this site is so brilliant. I save things from this forum for her all the time. Cx

[wendydee]

Hi Caroline

I have always been told that anything under 35 is normal too. Mine has been 545 before diagnosis and anywhere between 8 and 22 after my op. it can be affected by having a temperature, or an infection, lots of other reasons other than OC. I am sure your friend is being looked after well. The RM has such a brilliant reputation. Oncologists and specialists have recently slowed down their use of CA125 tests, because the results can often vary considerably and worry patients, which may be what is happening now. They say they now prefer to rely on checking other symptoms in conjunction with CA125. I hope this will reassure you and your friend a bit.

Love Wendy xx

[retired70 in reply to wendydee]

hi Caroline . I was so interested in your reply. I had operation plus chemo and radiotherapy last year and my CA125 was 15 then 14. At outpatients yesterday it had risen to 24 causing me much anxiety. However, my Consultant also said that the results can vary considerably and said that many hospitals were not using the test and going on patients symptoms. It was suggested I did not have the test but go on any symptoms I may have and an internal examination Feel more reassured already although I realize I will have ongoing uncertainties about the return of cancer.

[wendydee in reply to retired70]

Hi retired70

My CA125 results were always up and down, lowest was 7, highest was 19, after my treatment. They were never any cause for concern. I think everyone's levels go up and down naturally. I think that's why a lot of consultants don't give them now and prefer to go by symptoms on a watch and wait regime. They say it's much less stressful. Hope you're not getting too stressed by it all!

Love Wendy xx

[caro]

Wendy, you are always an inspiration. Thanks so much. can I just ask you where did your result finally settle? I know you've been clear a while now, but do you still go for blood tests? Cx

[wendydee in reply to caro]

Hi Caro

I had a yearly blood test until my 5-year mark when I was given the all clear, but I asked for another two after that, just for reassurance. I haven't had a blood test since 2009. I still have the option of a quick referral, via the CNS team, if ever I have any concerns. My CA125 results were always up and down, lowest was 7, highest was 19, after my treatment. They were never any cause for concern. I think everyone's levels go up and down naturally. I think that's why a lot of consultants don't give them now and prefer to go by symptoms on a watch and wait regime.

[desertpirate]

Caro,

I was diagnosed with stage 4 OC mid Feb. 2011. My CA125 was over 1300! I spent 2011 in surgery (March 2011) and 4 months of chemo (May-Aug 2011). I am still getting Avastin infusions every 3 weeks (clinical trial). My CA125 was at 35 just 3 weeks into chemo. It now goes up a little and down a little. It has fluctuated between 5 and 6. I too have been told anything under 35 is normal. But I have also heard that what ever your number is within the 0-35 range, it should not stray far from that number. In other words, a dramatic change might indicate something of concern. Since my "normal numbers" are 5 and 6, I would be concerned if I saw a twenty something. But for someone who's normal is twenty something, they need not be concerned because it is still under 35. I have also heard what Wendy said about specialists now using other symptoms in conjunction with CA125 readings.

Desertpirate, USA

[caro in reply to desertpirate]

Thanks desertpirate. She's had a really terrible, prolonged cough and cold and is hoping that as it's still within normal limits, infection might be the cause. But I know everyone on this site lives with this awful roller coaster..Brilliant that you're on Avastin. good luck and thanks again.

Cx

[LizK]

My consultant has told me that trends are more important than fluctuations, so he would only act if three tests in a row showed a continuing trend of getting higher. Hope this helps.

Liz X

[JohnCFlora]

Hi Caroline X,

I have been studying rise and fall of CA125. My mother has ovarian cancer and has had monthly CA125 tests for 9 months while on chemo. She was first at 183 U/ml, and then after 2 months of chemo she went down to 65, and after 2 more months she went up again, this time to 167, and then she went down to 55. Then 2 months later up to 139. The doctor said the chemo wasn't working, but I disagree.

I graphed out her monthly CA125 data and found that it rises and falls with maximums and minimums like a sine wave and while she was on chemo the maximums were going down, from 183, to 167, to 139. I think that when doctors say the chemo is not working, they may be wrong, and if you wait, the CA125 levels will go down, but down in a fluxuating, sine wave that gets smaller and smaller until the levels are down to 35 U/ml, which is normal.