Feeling really down

I had a hysterectomy 7 weeks ago and am waiting to hear when chemo is going to start, I saw my GP this afternoon and asked for the results of my CA125 (taken last week)

They are 406 now, having been 203 before I had surgery. How can that be? I may be naive, but had presumed that if "all visible signs of cancer" had been removed, the CA125 would fall. Now I am worried that a load of cells were released during surgery and are now rushing round my system and setting up colonies.

I know I am sounding overly dramatic, but I live on my own and have come home and just want to sit and cry. Thank heavens I have you ladies to talk to.

17 Replies

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  • Oh bless you, no, you're not being dramatic and I'm really surprised your GP didn't explain to you that the CA125 is an inflammation marker and this is why your CA125 has gone up because your insides are still very inflammed. THis is something your surgeon should have explained to you at your six week post op appointment. I hope this helps, massive hugs and sorry for the brief post but I'm just on my way out, massive hugs Kerry xx

  • Try not to worry love. I had exactly the same concerns. It's likely your marker is up because of the operation. You've had major surgery and will still be inflamed. That's what my CNS told me.

    Debs xx

  • Thanks for your kind words. I would be more reassured if the consultant hadn't said at my 6 week check that he would hope to see my marker down below 30.

  • Please try not to worry, as the other ladies have said your CA 125 can be affected by lots of things. I suggest you ring Ruth or one of the Ovacome team to get advice. Im sorrt to hear your on your own, sending you a big hug, please keep us posted xx Kathy

  • I know everything takes on hideous proportions, but please try not to worry. My CA125 was 3,948 before my hysterectomy, about 700 afterwards and 75 after my first chemo session. It's been around 10 for the last two years. Everyone is different. I live on my own too and really understand. Deb x

  • My last 2 CT scans showed that the small cancers remaining in my peritoneum after chemo and op were 'stable' yet the CT marker is still rising. My doctor said that the most important things were the scan + how I feel (I feel fine). He also said 'the CT marker isn't the cancer' which is a good reminder. Wishing you all the best.

  • Thanks for this. I know that the marker isn't an exact science but somehow was expecting after all the effort of the hysterectomy I would see a bit of positivity. Only just coming to terms with how this OC operates I suppose. It does it's own thing and has it's own agenda!

  • 27-359, You are not being dramatic. You need someone to listen to you and hold your hand. The CA125 gets elevated from many types of inflammation. The surgery itself causes inflammation. My CA125 went UP after my first chemo treatment!!!! It was 796 when I got diagnosed and rose to over 1,000 after initial chemo, then it dropped to 336 after second chemo and just kept plunging. I tell you this so that you can stop torturing yourself with scarey thoughts. If you want to read actual studies and abstracts about OVCA Google BioMedicalPublications and put in the topic you're researching. I must warn you however that too much information can actually make you feel more afraid!!!! If you're googling for information at least get the NEWEST studies, no more than 5 years old, and only read the ones that apply to your diagnosis. Be careful, however because statistics are taken from thousands of cases and you are YOU. According to nearly everything I googled I should be dead and buried by now. I am feeling great!!!! Yes I am bald. Yes I have some side effects from the chemo, but the quality of my life is pretty darn good. I get tired, but I rest. I get emotional, so I let myself cry. I feel joy and I share it. You can manage this, there are many, many wonderful women here with love and support to share. Tesla in Seattle

  • Thank you so much for your kind words. This is a crappy disease we have somehow acquired, and it makes all the difference being able to turn to you ladies for a bit of reassurance, love and straight talking.

    I am so pleased that life is good for you and wish you joy and happiness.

  • I would say the same as others that the CA 125 is not an exact science and rises for all sorts of reasons, often in response to inflammation due to major surgery. Mine was 70 prior to surgery then rose to over 300 after chemo 3 then dropped to 12 after chemo was over. Please don't get fixated on it as a measure of what is happening.

    I too live on my own and know how desperate you can feel while coping with this disease. If you feel like crying, that is only natural and normal and I would say go ahead, as you will feel better afterwards.

    We are all here for you on this forum so do keep letting us support you.

    Best wishes, Barbara

  • Thanks Barbara. Knowing you are all there makes all the difference.

  • I agree. Mine did not plummet till first chemo, & all the way down to 32!!!

    Get yourself fit & ready for it & push to start soon!

  • I am doing just what you suggest and am getting my body as strong as possible for the onslaught.

  • As with other replies, my CLA trebled after surgery, that's what was expected but if that's not been explained to you then it's easy to be worried. It will also blip with illness, low bloods etc etc

    Take care

    Clare xx

  • Thanks for the reassuring words, but what is CLA? I am only slowly learning these abbreviations!

  • Hi,

    CA125 is the gold standard tumor marker in ovarian cancer. Serum level of CA125 is used to monitor response to chemotherapy, relapse, and disease progression in ovarian cancer patients.

    It's very important to be aware that this blood test result may not be above the standard accepted medical normal range of a blood test reading result of up to 35 in approx 50% of early ovarian cancers and there are also false positives where a woman has a high reading but does not have cancer. The medical profession is now working more towards monitoring an individual woman's trends with her own readings.

    Clare x

  • Thankyou.

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