CA125 higher now post chemo than pre op any advice or similar experience?

Hi I am new to this site so apologies in advance for long post. I had stage 1c ovarian cancer and was operated on I. May when they removed three large masses, this was gollowed in June with full hysterectomy, both ovaries removed, appendectomy and two sets of lymph nodes. They took biopsies from my one gum which came back clear. I had six cycles of chemo Carboplatin and had CT scan pre Christmas and was assuming my meeting with my oncologist today I would be given the all clear. Unfortunately he gave me the news that my bloods came back at 67 which is higher than pre first surgery which had been 54. I am floored. He is referring me for a PET Sscan and started talking about radiotherapy, chemo and possible surgery etc. I want it to be a false positive but even though bloods can be wrong I felt he was assuming the worst when I want to put this behind me and get on with my life. I am 43 and have two young children aged 4 and 2 and about to get divorced!

Should I go to my GP and get a pee test to check not a urine infection? Had Ui previously as bladder difficult to empty post surgery. Any other infections that can push up blood count markers?

Many thanks in advance ladies


8 Replies

  • Hi there... I am sorry to hear about your situation. I was wondering what type of Ovarian you have? Your staging was 1c at the time of your surgery which is a good thing, isn't it? It isn't ideal, non of it is, but Ovarian is more curable the earlier it's caught.

    If your marker has gone up, it could be for other reasons other than Ovarian as you know. The Mayo Clinic lists some though this list isn't comprehensive:

    If you go to ask your GP and find you do have a urinary infection that might help to calm you but only if you do have one. And even if you do and you get medication, the feeling won't go away now your oncologist has told you there is a possibility of something else?

    You seem to have been offered rigorous testing which is a good thing. You also seem to have a cautious oncologist who wants to make sure which is a very good thing in my view.

    It's hard not to worry when the remedy (I.e. surgery, chemo and radiotherapy) has been mentioned before the results are in, I know.

    I'm just trying to reassure though it's a clumsy attempt.

    I hope the scan results are good . Xx

  • Hi, I was also 1c, diagnosed in 2009, my ca125 has never been below 50 and at the moment is 93. I am cancer free but my onc said some people naturally have a high normal ca level. Hope this helps. Jo, xx

  • Also forgot to mention my last ca test was done using a more sensitive test so they gave me. Two results one from old test which was 55 and the new one in the 90's so my ca125 had not risen at all and has remained in the 50's since chemo. You should check if a new test was used on your blood hence the rise.

  • I think 'assuming the worst' is probably the default position of a good gyne-onc.

    As Tina says, a cautious doctor is better than one who says, 'Oh it's just a blip' and does nothing.

    But that's really quite a small rise, and some doctors would just do another test in a few weeks' time to see if it's a trend. In the end, it might be more reassuring to have the PET scan and know for sure. Did he talk about your CT scan?

    My Ca125 was 130 pre-surgery. It turned out to be something called 'Borderline', i.e. not cancer as such. It was Mucinous, and this category is unreliable for Ca125. I'm going to have 6 monthly scans for the next 5 years but they won't be testing my blood. I was told that the original elevated reading was caused by a large tumour rubbing against other organs. 'Normal for you'.

    Talking about possible treatment may have been his attempt to reassure you that there are plenty of options available for you, if something does come up on the PET scan? If only they knew how minutely we examine every word they say.

    So sorry you've had this scare, and hoping that 'a scare' is just what it turns out to be.


  • Hi, firstly no need to apologise to us. Secondly, the other ladies seem to have said it all, one even asked my question, did he mention anything at all about the CT scan you had already had?

    I think you need to try and stay positive if you can. UTIs normally cause symptoms, like burning or pain when peeing, so if you don't have these or other symptoms, then there is no point in going to GP for test. I'm sure your scan will be carried out very soon as your oncologist seems to be on the ball. Good luck. Ann xo

  • Dear all thank you so much for the excellent advice and very sensible and comforting points about having a cautious gynae onc. I will appreciate his concern now rather than let myself get into a tizz. I do feel well and have just been given an appointment for a PET scan next week. Thank you all so much for your kind replies, they really are much appreciated :)


  • i am 52 and just found out i have fallopian tube cancer and need the same kind of chemo that you had. how was your chemo? im scared of extreme nausea and vomiting. did you have any of that and if so, when did it start or stop. also was your blood test a CA125? i have found in my research those test results cant be relied on very heavily. im hoping yours is overall not an issue. God can heal! Be strong and keep focused on him!

  • Hello sorry to hear your diagnosis. I was also very scared of chemo as I hate being sick and nausea and was also worried about hair loss and how I would cope having children. Carboplatin didn't make me lose my hair and I only had slight nausea for a couple of days and that was controlled by the anti-sickness medication they gave me. My mouth became slightly sore. They advise only using a soft manual toothbrush and gave me a mouthwash which worked well. From my experience I think it is something I had built up a big fear of and it turned out too be completely different. I really hope it will be the same for you. I think most people who have it don't suffer severe side effects. Best wishes and good luck :)

    Esther x

You may also like...