High CA-125 and a clear ultrasound!!!

Hi all, thanks for all the advice. Will the GP refer me for a private CT scan or PET scan or do I need to go back to the gynae who is adamant that's its Endometriosis even though she hasn't done a laparoscopy in about 11 years! I also have hip pain and lower back pain but she said to take up yoga!!! She also said that I don't need to check the CA125 until I the injection wears off ! I am not due to see her again til next feb by which time my bloods won't have been checked for 11 months!!! I have that fear that I have a ticking time bomb inside me! My CA125 was 96 last march!!!

8 Replies

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  • Hi are you in the UK? There will be slightly different pathways etc depending where you are... Sx

  • Perhaps a CT scan might be an idea, if only for peace of mind? You can always ask for a second opinion as well . Good luck ❤️Xx Jane

  • Are you in the U.K.? You need to demand tests every 2 months in this case! If they refuse, go to another Dr! This is very important. You can always do the test privately too.

    Jane is right below, ask for a second opinion,

    Nicky x

  • Hi Nicky,

    I am living In Ireland. I went back to gp yesterday and I got my Ca125 repeated! I had an ultrasound today and he found a 2.8 cm cyst in my left ovary which my Gynae didn't see 6 weeks ago!! He made me drink lots of water and he got a really clear scan. It looked black with a grey line dividing a third of it. He is going to rescan me in 6 weeks but I suppose if the CA125 is high maybe the plans will change! It was 64 last sept, 39 in no and 96 in March!! I also have to go for scopes both up and down in case it's bowel issues!! By the way this is a fantastic forum!!

    Thanks,

    Maria

  • OMG! Get yourself to a gynecological oncologist immediately for a second opinion. I was fobbed off and dismissed by 4 different doctors who would not listen to me. Please push hard and advocate for yourself now!

  • When I was first diagnosed, nothing showed up on the ultrasound but my specialist then organised a CT scan straight away which showed up the tumours on my ovaries. A second opinion may give you peace of mind. There is advice on seeking one on this site. You should find it in the Pinned Posts section on the right of this page. If not, the ladies on the helpline are a fantastic source of information. All the best. Jo 🌺🌸🌻🌼🌹

  • Knowing what I do now and after 8 months of being told I had indigestion by my GP I'd say listen to your body. Ruling it out is far better than the alternative. I changed GP if I hadn't I wouldn't be here now

    LA xx

  • Hi guys, thanks for all the advice. I went back to my GP yesterday with lower abdominal pain and a constantly full bowel feeling . He took lots of bloods including theTumour marker cells for ovarian and bowel cancer. My Ca125 was 96 on 1st march. He sent me for an ultrasound today and a 2.8 cm cyst was found on my left ovary. He didn't say if it was harmless or sinister but it mostly looked black with a possible faint division down one third of it. He is going to rescan me in 6 weeks to see if it's increased in size. I have to wait another 9 days for the CA125 to come back! I am in a temporary menopause at the moment so I shouldn't have any hormonal cysts! Should I be worried!

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