NRAS
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Going out of my mind and hit a all time low.

Hysteroscopy showed benign fibroids and cyst, smear normal...so why a CA125 at 785 and rising. My Gynae is mystified and it has taken my pushing for anyone to consider further investigation. Now in for a CT of the abdomen which I really don't want after many many x-rays over the years and the risk they carry, I suggested MRI but was told it would not see as much. Anyone else had a CA125 of 785 and been ok, all I ever read is people quite ill with a CA125 of 68. I really can't think straight and due to go abroad in a week on family holiday with thoughts of the hospital ringing with results as I requested rather than at the hospital. i just want to sleep sleep sleep and be unaware.

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Hi hope u get sorted out soon .I had abnormal smear test twice .went to gyne private as gp wouldn't do anything .had scan showed a lump had it removed .thank God it was benign .u know ur body if there's something wrong inst to get sorted .let us know hugs amy

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Thanks Amy, it really helps knowing there are people out there to listen. I no longer have my mum who was a great listener, hubby is a great support but definitely not the tea & talk type and I don't really do girly get togethers. X

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What I don't get is why they don't just take the fibroid and cyst out anyway? Benign fibroids can cause CA125 levels to rise, so it would help work things out to get rid of it. Try to hold in your head that 97% of people with raised CA125 levels don't have cancer....

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Hi helixhelix, I chatted to my Gynae on the phone yesterday and she said that fibroids would not give such a high reading. She is happy with her side of things and now recommends the Abdo CT. I am clawing over the internet constantly and girls with a bad diagnosis often talk of quite low readings?

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It's a really difficult time waiting for tests and results and just not knowing what is going on. But unfortunately there isn't any other option other than ignoring it - and that won't make it go away. It's good that the gynaecologist is taking it seriously and looking for other reasons for the raised test levels - but test level can be different in different people, so don't be too pessimistic before you have further investigations.

Please keep in touch and let us know how things pan out. We'll be thinking of you.

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Thank you oldtimer, for someone who can be quite pragmatic and not particularly a worrier, everything flips when it comes to such uncertainties. I think it's a control thing or certainly lack if it.

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But if you still have flooding how can the gynae say she's happy with her side of things when you still have gynaecological symptoms? But that's by the by. Apart from this high reading - which may well be totally irrelevant - nothing else has flagged up anything to be concerned about, so do please try not to think about it all the time. Easy to say I know, but try to keep off internet as you will only find bad news stories. It's rare for someone to post saying that nothing's wrong!

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Thanks helixhelix, the rational me would say exactly as you have just said. I have a friend due a CT and I was very pragmatic and rational whilst being understanding as we discussed her concerns. I honestlly felt a CT was the way to go and totally understood her reservations, only now am I really understanding her emotion. I'll keep you posted.

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I'm sorry you have this time of worry. its very difficult waiting for results and arguing with yourself between whether all will be fine or not. i feel for you. The good thing is that the doc is 'on the case' and if anything needs sorting they will expedite it. Sleep is a relief for some time out, but maybe a good dose of holiday distraction will help.Wishing you well.

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Aww thank you Norisa sometimes just kind words can help. Tried talking with hubby who will move Heaven & Earth to make things happen but he doesn't do tea & empathy. No one was on the case following my discharge as an outpatient for a hysteroscopy, it was me that sneakily added the CA125 to my blood form. It has taken my tenacity to get the gynae to follow it up. She has now gone on annual leave whilst I am due a CT scan on Friday. My gynae asked how I'd like to receive the results, I told her by telephone. Now all my pre-holiday enthusiasm with my hysband and son is being quashed by intense worry. Sorry to go on. Apart from gynae problems (6 years of perimenopausal flooding) I may not have been aware of the CA125 if I hadn't gone delving, now it can't be ignored.

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Hi. I'm sorry. Reading your post more carefully I realise you don't feel at all supported by your treatment so far. I sympathise with you on lots of levels. I have recently supported my OH through scope/MRI/biopsy etc (all stemmed from side effects to RA drugs). Waiting for results (pre holiday) I didn't find rational thinking touched my feelings at all , so I had to be kindly towards my feelings. My head can do rational very effectively, but feelings don't just come into line sometimes. Maybe you could think of some ways that you can feel looked after. Self soothing things like a scented bath, making a cake and digging into it etc. Kindliness, not 'pull yourself together' is the only way forward. (according to me, that is). Maybe think of something your husband could do for you if empathy isn't his thing. You might need to be clear what it is. (Is that a sexist comment? Apologies to any males out there).

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Thanks again Norisa, I'll give myself a good talking to.

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