I'm new and awaiting diagnosis, so very scared :(

Hello everyone. I'm 51 and have a full active life, I'm a singer and a mum of 2 very needy adopted teenagers, one with special needs. I am her moon and her sun. Last week I was rushed into A&E with serious abdomen pains and vomiting. I was in for about 4 hours and then released with a box of buscopan into the rain in my pyjamas at 6am. I followed up with my GP 2 days later as although the terrible pains had stopped I was still very bloated and in abdominal discomfort. I have now had bloods done by our nursing practioner and my GP rang me to say she is concerned by the levels of one of my bloods (assume now she meant my CA125) and wants to urgently refer me to a gynae for an ultrasound scan. I am lucky enough to have private healthcare from my husbands policy so I am seeing my Consultant this afternoon. I am truly terrified. I only started getting symptoms 10 days ago (bloating and tummy pain) but the excrutiating stomach pain and vomiting was only for one night. I really have no idea what to expect and I'm about to pay the balance on a very expensive 'holiday of a lifetime' trip to the US we booked back in January which we are supposed to be going on in 7 weeks time. I really don't know what to do. Any advice welcome. Thank you. x

6 Replies

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  • Well I had my meeting with the consultant today and she was furious that my GP had ordered CA125 bloods before a scan, she said all that does is get patients all worried for nothing and as it turns out that has been the case for me. I don't have OC which of course is a relief, my bloods were only slightly raised due to some sort of inflammation in my gut so I'm being referred to a gastric consultant. Good luck everyone with your journeys, wishing you all wellness and recovery.

  • Well that is good news but I wonder would it have been wiser to get a scan. Your gp should be able to refer you for an ultra sound to make sure nothing is going on. It may be gastro related but I think my self your consultant should have erred on the side of caution and ordered a scan and got the results before referring you to a gastro

  • Thanks, I did infact still go ahead with the ultrasound scan to be on the safe side and they found nothing of concern. My CA125 levels were only 40 which I was assured by the gynae consultant, that although it's slightly raised above the normal rate of 35, it is not in the 1,000's which is indicative of OC.

  • Hi there

    My ONC consultant says that CA125 IS not used to diagnose but to monitor. He was more interested in my scans and histology results. I do have regular CA125 to watch the levels drop with treatment. They stated at relatively low levels of 175 and now down to less than 20.

    I am glad to hear you had an ultrasound as well. It is more reassuring than the levels of CA125.

    Glad all went better than you initially thought.

    Bernie

  • I am sure your consultant is right so, I had gut problems a few months back but had camera test and nothing obvious. I got a prescription for nexium and told that I could either have an upset tummy or bone fractures. I am on meds for Osteopenia and feel that is the problem. I stopped taking them and it improved so slow to go back on the Fosavance again,

  • Glad for your good news. CA125 is an indicator, but an important one. It may produce a statistically significant number of false positives if used to diagnose, but I wish we had had the opportunity to be scared by the result of the test as it may have led to earlier treatment and diagnosis. The problem with ovarian cancer is that it is often diagnosed in later stages which makes treatment more difficult. I for one would commend and endorse your doctor's prompt action.

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