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I have questions about the CA-125 bloods test

Chrissyh
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Hi I was wondering if someone could answer me , I have had the CA-125 test which came back within normal limits but my gynecologist still wants to do laparoscopy and biopsy of my ovarys and surrounding bits .the scan showed my mass has doubled in size and is at 10 cm . How reliable in diagnosing ovarian cancer is the CA-125 blood test ?when I was in hospital on ward I heard alot of medical terms I'm not familiar with they were saying stuff like theres evidence of this and that ,But after that my bloods test was ok . So why do they need to go in and biopsy it all?  Sorry I have alot of questions I'm just worried and confused. They did say it could be borderline ovarian tumour or something cavity left after a operation I had 9 years ago .I said ok if it's the cavity why is it growing ? Double in size in a year and 9 years after surgery .I'm driving myself crazy with worry .

  • Hello Chrissyh

    Thank you for posting in our Ask the Nurses topic area. The nurse team is out of the office for the festive period.

    The office reopens on Wednesday 28th to 30th Dec 9 am to 5 pm. Then closed 5 pm 30th Dec, back on 3rd Jan 2023 to 6th Jan, as normal 9 am to 5 pm.

    They will reply as soon as they can but you’re also welcome to contact them on 0808 800 4040 during opening hours.

    Best wishes,
    Jenn
    Cancer Chat moderator

  • Hi ChrissyH and thanks for posting.

    It does sound like you are having a worrying time at the moment.

    The level of CA125 in your blood can rise for many reasons including endometriosis, having a period, ovarian cysts, and sometimes ovarian cancer. This is why it can't be used on its own as a test for ovarian cancer.  Some people can also have a CA-125 level within normal limits and have ovarian cancer.

    You said you had a scan which showed a mass that had doubled in size.  This could be why the gynecologist wanted to do further tests.

    I wonder if it is possible to leave a message for your doctor so they can explain a bit more about what is happening.  They will be able to tell you why they want you to have more tests and when you can expect the results.

    It can be so overwhelming being in hospital and hearing all sorts of terms which are unfamiliar, hopefully your doctor will be able to explain more about these and what they mean.

    I hope you find out more soon.

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care

    Rachel

  • Offline in reply to CRUK Nurse Rachel

    Hi Rachel they held the MDT meeting today and I had a call from the Macmillan clinical nurse specialist who booked me in with consultant tomorrow face to face . 

    I'm very worried now as Macmillan nurses are cancer nurses and it seems really quick them getting me in tomorrow and face to face too. Hope I'm wrong .

  • in reply to Chrissyh

    Hello and thank you for getting back to us.

    This does not mean you necessarily have cancer.  It looks like you are being told the result of a scan and/or a biopsy, so cancer teams also will see people to tell them they have cancer but also that they don't have cancer.

    I hope you know more about your situation tomorrow.

    Take care,

    Caroline

  • Offline in reply to CRUK Nurse Caroline

    Hi I went to appointment it was an oncologist I saw he said they can remove my ovaries and mass then they will look at the tissues to see if it's cancerous . I'm quite a complex case because they can't just go in and biopsy they would need to do all in one .it's risky surgery for me because of previous surgery and angina and diabetes . They also said before surgery I need rapid access referral for my bowel as I'm losing big clots of blood with stools and other symptoms from there .so they giving that team two months then I've got to see gyne and will be booked for surgery .

  • in reply to Chrissyh

    Hello and thanks for getting back and updating us about your situation

    I am sorry to hear you need surgery and appreciate with some other health issues this is concerning you.

    Do talk through any worries you have about the operation with the team so they can hopefully put your mind at ease. Unfortunately with pelvic masses it is often only after they have surgically removed it that they can assess it properly to rule out cancer for sure.

    I'm also sorry to hear about you also passing clots of blood in your stools and hope the GI  ( gastrointestinal) team figure out what is going on there very soon as well.

    Do get back if you have more questions or give us a call on 0800 808 4040 weekdays 9-5.

    Hoping everything turns out okay for you

    Take care

    Naomi

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