Just had ca125 blood test and result of 145 - need info

Hi, I am 42 and had persistant bleeding for 8 months and some abdo pain. Cutting long story short had an ultra sound last Friday which showed a cyst 3x3x4 with some "internal echoes" . Gp suggested ca125 to " eliminate worst case scenario". Had a call to go to see Gp and told ca125 is 145 and normal is below 35!! She has done an urgent cancer referral to be seen within 2 weeks. I understand that ca125 test does not necessarily mean you have OC and I know my symptoms are not typical but I would just like honest opinion as to whether with it being three times normal value does this mean good chance it could be OC. Just want to be realistic and prepared . Any similar experiences or information would help me deal with this "limbo" situation. Many many thanksxx

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  • Hi,

    Honestly, I think it's inconclusive!

    You might give the ovacome nurses a ring tomorrow morning, but certainly the ca125 could simply be inflammation in your pelvis which you know you have with a cyst. Many of us have had ca125 in the several hundreds and thousands - others have had no elevation!

    Try not to panic - just get it diagnosed. A gynar/oncologist will have a much better idea.

    Hoping it's nothing sinister.

    Isadora.

  • Thank you so much Isadora.. just the waiting..but your answer has helped already xx Take care

  • Dear Gromit

    It's good you've posted on this site. Isadora has given you sound advice and I guess it's reassuring to have this backed up by a second and third opinions from this group.

    As Isadora says CA125 can be raised for many reasons. Your GP is going along the correct route and it's good practice to respond quickly by getting you checked out. If it's the cyst that's causing the problem it's good to get it taken out as soon as possible and may be quite a minor procedure.

    If your situation is anything like mine no one will know for sure what the cyst is until there's been a histology examination and that took a further 6 weeks after my op. I'm sure the Ovacome nurses will be able to advice you on this. I've found them tremendously knowledgeable and reassuring. Sometimes we forget to ask questions at times like these. Don't forget you can also go back to your GP with additional questions and to check out the procedure in your local area.

    Don't hesitate to give Ovacome a ring today. We'll be waiting to hear how you're getting on.

    love Annie xx

  • DearGromit,

    Both Isadora andAnnie give good adice. CA125 is not conclusive though it can be an indicator that further tests are needed and not all OC's secrete it. Do talk to the nurses at Ovacome and le us know how you are doing.

  • Dear Gromit,

    it's the waiting that is the worst bit... we all get used to it, but they have fast tracked you, so that will help. As everyone says, it could be raised for a variety of reasons, and sometimes knowing too much is as bad as not knowing enough! Nobody will know until the tests are all carried out, and histology carried out, so try and enjoy yourself to take your mind off it. Worrying makes things worse.. a postivie attitude will help you get through.

    Good luck

    Viv

  • Thank you so much for taking the time to post your words of wisdom. I feel a bit daft after reading what alot of the members on this site have been through. Just waiting for the appt date is bad enough.. going to be a long BH weekend!! Sarah xx

  • Hi there

    Sorry that you have had to join our "club" but welcome ! We have all been in this situation so know how you are feeling.

    Your CA125 level might seem high , but in cases of full blown invasive OVCA it can be well into the 1000s. I had a raised level and all sorts of terrible other signs. It transpired that I had a borderline tumour, which didn't need chemo or radio therapy. Two years on I'm fine now, back at work , enjoying life and doing everything and probably even more that I did before the surgery. I'm now training to run ( for the first time) the Race for Life and really enjoying it.

    Fingers crossed so will you be fine too, these few weeks are by far the worst , try and take things easy, but get out and about as much as you can. Plenty of treats help alot too.

    Take care

    Big cyber hug

    Charlie xxxx

  • Thanks alot Charlie.. mind me asking what other signs you had and what surgery. Was your ca125 level similar to mine or alot higher???? Just trying to prepare myself for any possible possible scenario. What an amazing site this isxxxxxx

  • Hi Sarah!

    It will be good to know, and hopefully, it will be OK for you. However, if you are thinking about signs and symptoms, you could look at the BEATonline symptom tracker on the left hand side menu of the Ovacome home page (not this site),

    Just to let you know, you can also look at our stories by clicking on the member's home page. I went through something similar to you, but I am still here, still well, fingers crossed ;-), even though it was OC in my case. It wasn't too bad or too scary. You will have lots of support along the way.

    BUT ...... it may all be fine. I echo the words of others when I say you may well be worrying needlessly. So many of these CA125 turn out to be false alarms. I hope it is so for you. Plan a couple of treats this weekend and a glass or two of wine always helps!

    Love Wendy xx

  • hello all you lovely people.My update is that I have an appt this Friday 11th May so that was pretty quick bearing in mind the bank holiday and only got scan and test result a week ago. BUT I know it sounds ridiculous but I am worrying now BECAUSE they are seeing me so quickly so they must think something might be wrong!!!!! Managing to be really strong on outside as I work in as doctors surgery as a phlebotomist but getting more and more anxious. It is all an exercise of keeping your mind on the right track I guess......

    Sarahxx

  • Hi Sarah,

    Yes indeed darling, it is a real mind over matter thing because its usually how we THINK,. to how we are going to cope in any situation like this.

    It`s perfectly normal to be anxious, my husband is always more anxious than I am. My moto is no use wasting energy worrying about something until it happens. Although I have felt small wobbles along my own journey (after diagnosis that is).

    My Ca 125 was 1,008.00 at the time of diagnosis, my only symptoms was bleeding after intercourse. This was also happening to another friend of mine but hers turned out to be nothing more than the menopause.

    Another friend has had benign ovarian cysts and they can be hellishly misearable where as my malignant tumour the size of a melon actually gave me little trouble.

    There is no way of knowing what is your problem until investigations are under way, but they will get to the bottom of it very soon and if it is cancer a week or two hanging around won`t usually put your life in danger.

    You are in good hands now - one thing that gets me through is the thought that millions of women are walking around with this deadly disease in their body and don`t even have a clue they are seriously ill. We do know so we are being looked after - I see this as having a better chance of suvival now.

    Hope that helps a little.

    Good luck and keep us up dated how you get on, if its good news then put our minds at rest and if not such good news then sharing is often better than that horrible isolation feeling. Because feeling like the only person in the world going through this is so not good for any of us.

    I also took up a new hobby - I am draining the bank account with patchwork and quilting, expensive hobby to get started with all the right materials but therapuetic and it keeps my mind off the cancer.

    All the best from Tina x

  • Thanks so much for your reply. Just wondered if could ask you for advice. I have been having pains in my"backpassage"! - not sure what else to call it..when I think about it this has been going on for a few months. But recently got worse and really struggling to go to the toilet (number 2!) hurts like hell. I have been putting it down to constipation..also had some real sharp sudden pain aswell. Should I mention this at next gynae appt or not?????

  • Hi. You have already said that a raised ca125 reading does not mean OC - each & everyone one of us had & has different readings. The only means of determining OC is for a series of tests: CT scan, ultra sound & biopsy/ovary removal. Your GP should explain this fully - my symptoms may not be your symptoms and that is why diagnosis is no difficult. But do persist if you are worried - nurses on Ovacome and Mcmillan are there to help - so use them. Take care, Daisies

  • Hi Daisies I dont know if you realise but this post is 2 years old. If you look at Pauls post on this it will explain that old posts are coming up.

    Regards Barbara.

  • Thanks for that. As I did';t get Paul's post. Something is going wrong with this site and will have to watch the posting dates in future. Still encouraging Irish women to join up and do postings, so that we can all share & support each others.

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