Really worried about CA 125 results

Hi. I am 43 and for the last 2 moths have been going back and forth to my doctor's thinking I had a urine infection as I have needed to go to the toilet a lot more than normal. My urine tests have always come back normal and so I was referred for blood tests. My CA 125 level has come back as 39. I am not sure if that is really high or not but have now googled and read it can be an indicator of ovarian cancer. I  am booked in for a ultrasound and a transvaginal scan this Sunday and am terrified of what they might find. Has anyone else had a an above normal ca 125 and was it something simple.

Many thanks for reading. 

  • Try not worry too much, I no that's easily said than done, I've been back and forward they last 7 weeks, terrible pain ca125 was 819 totally freaked out, had scan the next day, so lucky there is no cancer, but a lot goin on due to endometriosis, so now waiting on a mri, and ca125 was done last week again and was down to 39, so many factors can change the result, like periods, flare ups or even just having endo, I hope you feel better xx

  • This thread has been really helpful for me. I'm 44 period stopped strange symptoms and sent for tests. Thought it was menopause but FSH is normal. Ca125 has come back elevated being sent for a scan and worried sick! 
    Reading all the posts has calmed me down a wee bit. 
    going private as the wait time for scan is do long. 

  • I too have had a recent c125 test. The level was 43. I am 50 and pre menopausal. I have been urgently referred for various scans.This thread is very reassuring.

    I was on the first day of my period when I had the blood test. I have lower left side pelvic pain that is almost constant, but doesn't get worse during periods. My transvaginal scan is Monday and seeing a gynelogical consultant for other tests Thursday. NHS have been very quick and efficient so far. Grateful to them but scared silly. Don't want to leave my children without a mother.

  • I've had an ovarian cyst for over 4 years and have consistently had a raised CA125.  I'm 44.  My levels were mid 40s but my most recent test is 88!  My cyst displays no sinister features at all and is described as a 6.9cm simple cyst, but my CA125 raising is a defininte worry to me.

  • Thanks for reply. I had my scan today and heard the technician say that my right ovary was 3cm and my left one was over 6cm. (where my pain is) I panicked and told her what I heard and asked is it cancer? She replied that I don't have cancer. I asked what do I have then?  She said she can't discuss it. Hopefully it's a benign cyst. I will find out on Thursday.

    Have you not been advised to have the cyst removed? Does it cause you any pain? Why are the doctors not concerned that you levels are high? I did hear that you should never have that blood test while on a period because it can give false high results.

     

    W

  • I've just had blood results back today and they're not good.

    I had twins in Nov 2021. I lost all the weight and then slowly gained it back. Then in Nov 2022 I suddenly gained 10kg in 6 weeks. 

    The bloaitng is awful. I can't seem to shift it although some days the bloating does go down. Other than that I don't think I have symptoms.

    My blood results for CA 125 are a MASSIVE 131!! They're trying to refer me for a scan but who knows when that will be. obviously came home and googled and now I'm feeling scared!

  • Hi ladies,

    I'm just joining this conversation as I've experienced my own ca125 journey. I feel that as soon as we have anything above 35 we panic as literature suggests it's abnormal. It is merely an indicator. 
    Last Friday my blood results showed raised ca125 at 79 and my gp referred me to gynaecology due to additional symptoms. I was convinced I had ovarian cancer. Had ultrasound scan and vaginal scan on Monday morning, all cloak and dagger. Had a call Monday afternoon asking me to attend consultant clinic on Wednesday night to discuss results of scan. Again, convinced of worst case scenario. Attended clinic Wednesday where I was told that he didn't suspect ovarian cancer. My uterus lining was 22mm and there was a mass. I had a camera through the cervix, which wasn't as bad as it sounds, where there was a rather larger polyp. Because if it's shape and location he abandoned the biopsy and he recommended a hysterectomy. Having rationalised his reasoning and my symptoms, esp at 47, I've agreed to it in April.

    Its not always cancer so let's be kinder to ourselves. I made myself ill with worry for 5 days when it was really unnecessary.

     

    Sending positivity and love.

  • I am also joining the thread due to my recent elevated CA125 reading of 89. Having just turned 48, I assumed that the change in my menstrual cycle was down to menopause. But after spotting on and off for 2 weeks, I started bleeding heavily for over 1 week so I went to the GP. She was very thorough but couldn't do an internal examination due to the bleeding, but checked my abdomen and felt no lumps etc. She decided to send me for blood works, a pelvic scan and ultrasound, and I personally requested the OC test as well. Few days later my results...89!

    My doctor called asking me to get to the surgery urgently (whilst telling me not to panic), I was freaking out!! Went in yesterday, did internal examinations and a smear test and was sent back to the hospital for urgent blood test to redo the CA125. I got my reults back today...60! I had to blink back the tears at my desk. The GP has since escalated the pelvic scan and ultasound, so I have an appointment on Wednesday afternoon. 

    I've tried to remain positive as the doctors told me it could be a series of non cancerous things like fibroids etc. However, stumbling across this thread has been more reassuring than what they have said. This thread has been a life saver. Perhaps I can sleep tonight?

    N

     

  • Countless people have had this test myself included ,I had the call to say they suspected OC I was terrified ,after further investigation various examinations ops etc it turned out to be nothing serious ,I would expect you to find the same but its always best to check when you get the chance .

  • Thanks Jenny3109, it's shocking the number of false positive tests that I'm hearing about. But I totally agree with you, it's best to get it checked. I'm happy that you got good news, praying mine will be as well.:happy: