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. 

  • Hi Sam, 

     

    Sending best wishes. It's all a bit overwhelming so try to take it one step at a time. Focus on your next appointment and so on. 
     

    laura 

  • Hey, had my scan and I have a small cyst, having a rescan in 5 weeks they hope the cysr will go on its own but due to my history want to make sure.

    So I can now relax, she also said that doing a CA125 when I'm still having regular periods should not have been suggested because hormones can make the levels fluctuate.

    Thank a everyone for your kind commnets. It does really help speaking in these groups

     

    Sam xxx

  • Hi Sam, 

     

    That's great news! Really pleased for you. I'm 42 and still have regular periods so you've put my mind at ease a little.

    have a great Christmas 

     

    laura xx

  • Ladies just want to say this thread has talked me off the ledge. I got a call on Tuesday this week to tell me I had elevated levels on my ca125 test (47). I'm 43 and have had a pain on my left side for the last year. Initial scans found a 13mm fibroid and I was told they usually resolve. Dr eventually ordered further tests as it didn't feel right that I should be living with this pain. Now I'm properly freaked out. It feels like the dr has told me I have ovarian cancer. He even said 'I'm sorry to have to give you this news'. I've been referred privately, appointment on Monday, also paying to have my own ultra scan tomorrow because my head is scrambled and I can't stop thinking about my children. I'm a mess! Nsh referral letter came through today and says my appointment will be virtual! How will they achieve any diagnosis that way??! Thank you for sharing your stories, they have helped me. 

  • Hi mummy_vibes, 

     

    Let me tell you , they cannot diagnose anything virtually. They also cannot diagnose any form of cancer without a zillion tests and scans. I've had 2 ultrasounds, 3 CT scans and last Sunday and MRI, I joked with the hospital that I only need an X-ray to get a full house on scan bingo. I'm 43 and my ca125 is 65, 35 is considered normal , I also have a 10cm ovarian cyst. I've had people say it's concerning, other people say not to worry. Truth is, until it's out and tested I will not know. Please try not to worry, worrying doesn't solve tomorrow's problems, it only robs us of today with our babies. You got this!! It helps me to write things at night in a journal, kinda dumps all the thoughts from my overactive mind on paper xxx

  • Thank you for your reply. I'm trying to keep myself busy but the moments inbetween are terrible. I just want to know what - if anything - I'm dealing with! Wondering how much my period might have played in a high reading. I had the test on day 3, plus I feel that I am peri menopausal... 

  • I was ovulating when they took my blood tests and I think at 43 possibly pre-menopausal. My doctor said that she's seen levels above 100 and ladies not have cancer. Try not to worry. I find that the local doctors just tell you what they think , when you see the specialists they put you at ease x

  • You're very sweet, thank you for your reassuring words. Are you going to have your cyst removed? Can you opt to even if not recommended by drs? 

  • Unfortunately my cyst is so big it needs to come out. It's causing so much pain as it's sitting on my uterus. They are deciding if to take the cyst, that and one ovary, or everything. At this stage , I just wish they'd hurry up tbh x

  • I bet. I wish you well and hope you can successfully put this all behind you and get back to enjoying life and your family x

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