Waiting Game

Hi everyone,

I’m new here.

Had my CA125 blood test done and it has come back elevated (107), up 50 from last test 12 months ago. Have had a ROMA screening test done and am waiting for my ultrasound on Monday. I do have some symptoms but am trying to stay positive. My GP is already talking of seeing an oncologist gynaecologist, which I guess scared me a bit. Don’t see GP for results of ROMA and ultrasound until Wednesday of next week

I guess I just want to know answers but I know it is a waiting game. What was everyone else’s CA125 when they were diagnosed?

Thank you



  • Hi CatBrad,

    Welcome to the forum.

    My CA125 was around 948 just before I was diagnosed, more than 6 years ago. The only symptom I had was feeling full after eating a very, very small amount. One thing to keep in mind is that the CA125 test is not definitive and this marker can be elevated because of other reasons, such as an infection.

    Waiting for results can be extremely difficult and it's very hard to try and stay positive, it's a frightening time.   All I can suggest is that you take one day at a time.

    Please reach out if you have anymore questions, but only if you feel comfortable to do so.



  • Hi CatBrad,

    I unfortunately didn’t know what my CA125 was, I had an ultrasound that my gynaecologist had sent me for as he thought I had diverticulitis, but not notified of the results until I rang my GP as I had another episode of excruciating back pain, he looked at the scans and took some blood. He then rang me at 6:45 am the next morning and said that my bloods showed a high CA125 reading however that did not mean it was ovarian cancer. Then my gynaecologist sent me for a MRI and another scan and within a week I was having a consult with a surgical oncologist gynaecologist and a few days later had surgery. I had already had a hysterectomy but the ovaries were left, which showed a large cyst on the left ovary. The unfortunate thing about OC is that surgery is the only option to determine if it is OC. A few days later I was told it was stage 3 and I had 18 weeks of chemo., that was in 2013 and I’m still cancer free today. The only advise I can give is keep busy, your mind will take you to dark places; it’s a really scary time it’s the unknowing of it all. Breathe, I meditated a lot, did things that made me happy and cried a lot. I found the oncologist gynaecologist lovely answered all my questions, take a list of what you want to know. yes it’s a waiting game but not long now..

    We are here for you once you get your results if you want to let us know and how your doing.


  • Thank you ladies and big hugs.

    It is a scary time, but I have decided, after reading your responses, not to stress to much (easier said) until I have my scan on Monday. My doctor rang yesterday and said my ROMA was elevated and my CA125 was up a bit more from the last one 2 weeks ago. But wait until the scan and yes, keep busy

    I think I am finding it hard as my dad is into his 4th year of fighting prostate cancer, bladder cancer and leukaemia and I just cannot imagine having to tell them both if the outcome is bad. So I am staying positive now, or trying too

  • Hello,

    I'm waiting as well. Have been bloated for a couple of months, feel like I have period pain all the time and my lower back is sore. I have days where I could fall asleep at my desk.

    Went to the Doctor 10 days ago. Have had bloods done last week. Haven't heard anything so assuming nothing sinister on those. Had abdominal ultrasound this morning and go back tomorrow for pelvic ultrasound and CT scan.

    I just want to know what, if anything, I'm facing. The waiting is really tough.

  • Hi Paula,

    I know that waiting is very hard as your mind likes to play tricks on you with negative thoughts and all the “what if’s”..I’m sure that if your GP found anything that he was concerned about he’d had rang you, as mine did that after my bloods showed CA125 marker. Hopefully by now you have had all your other tests done and had a chat with your GP and been referred to a Gynaecologist Oncologist for a consultation. The problem with OC is that they can’t tell until surgery and the growth or tumour has a biopsy. It’s very surreal so just hang in there as my gynaecologist oncologist said it is what it is and together we will deal with it. Please let us know how you went and we’re here for you.


  • Actually, I was diagnosed with OC from a biopsy before surgery. Just saying. It is indeed all a pain. I wish more money could be spent on researching the cause and of course a cure.


  • Hi Chris,

    Thanks for replying. I had my abdominal ultrasound on Monday and my pelvic (transvaginal) and CT yesterday. I just rang the GP and they said that my Dr hasn't looked at the result yet (which had just come in). I was told that she wanted to discuss my blood results but that she was going to do that when I go in (I'm booked in Monday morning).

    I told the receptionist that I'm still not feeling great (I feel like I have period pain all the time) and am stressing. He said that they would get back to me today.

    I haven't been referred to a specialist at this stage. I'll keep you posted.


  • Hi Paula,

    Fingers crossed your GP saw you today and discussed your scans and bloods.

    Yes, keep us posted, if you don't already try Mindfullness or Meditation it does help.


  • Hi Paula,

    Try not to l've by the number. It is hard and it is only an indicator as to how active the cancer is.

    I have been doing this for 25 years now it was stage 3c when I was first diagnosed.

    Take control and don't let this disease take over. Try not to let your self think too much your mind is very powerful and anxiety is not good for you.

    My CA125 has been up to almost 150 and I have met woman with numbers in the 4+ thousands.

    Make everyday count rest when you need and try to maintain a happy enviroment.

    Kind Regards


  • Ladies that test can be very unreliable. I had a CT scan which found my OC. The gynaecological oncologist followed it up before surgery and the blood test did not reflect cancer at all! I was Stagd 3B.

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