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Thread: Awaiting scan after high ca125 test

  1. #1

    Awaiting scan after high ca125 test

    Hi everyone,

    Long time HA person here! Although I have been feeling so much better mentally for a good 2-3 years now 😊.

    So I'm hitting a period of worry and uncertainty - after bloating and discomfort I went to my gp who did some bloods. My ca125 (cancer marker) came back high at 45 with a 35 cutoff. I don't have my scan for over a week yet and I'm just not sure how I will get through... I'm incredibly preoccupied. Looking for tips and ideas on how to get through this without spiralling. I'm in my early 40's with young children - this last bit makes me especially anxious if I go there.

    Thank you

    S

  2. #2
    Join Date
    May 2017
    Posts
    1,054

    Re: Awaiting scan after high ca125 test

    Waiting for test results is the very worst part of diagnosis.

    Just remember you don’t have it until they say you have it. There must be other stuff that raises levels apart from cancer. It’s natural to think the worst. All people tend to do that and people with HA are experts are predicting their own doom.

    Just keep busy, I know what it’s like when something is in your mind, it’s there pecking away all the time. Get outside as much as possible, do stuff. Try not to sit ruminating. I don’t need to tell you but don’t sit googling what ‘could’ be wrong with you.

    Fingers crossed you get a negative result.
    __________________
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  3. #3
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    Re: Awaiting scan after high ca125 test

    Hi

    This is just a courtesy reply to let you know that your post was moved from its original place to a sub-forum that is more relevant to your issue.

    This is nothing personal - it just enables us to keep posts about the same problems in the relevant forums so other members with any experience with the issues can find them more easily.

    Please also read this post:

    http://www.nomorepanic.co.uk/showthread.php?t=213239
    __________________
    Nicola

    “Don't be afraid of death; be afraid of an unlived life. You don't have to live forever, you just have to live.” - Natalie Babbitt

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  4. #4
    Join Date
    Nov 2015
    Posts
    370

    Re: Awaiting scan after high ca125 test

    Try not to panic just yet. The CA125 test can be elevated for lots of different reasons, such as your menstrual cycle, harmless fibroids and benign ovarian growths (which are much more common than the malignant ones)

    I had a scare with this too, only the other way round. My actual scan showed something sinister, and I spent two weeks waiting to find out if it was something to worry about. My CA125 wasn't raised, but there was something visual on the ultrasound which was even more indicative of something bad, and they seemed extremely concerned about it. After a second scan and thorough exam from a specialist, they concluded an egg follicle had decided to collapse in a weird way and the previous ultrasound had picked it up. By the time they scanned me a second time, it was completely gone.

    Its never the thing until they tell you it's the thing. I hope you get the all clear soon.

  5. #5
    Join Date
    Oct 2016
    Posts
    3,849

    Re: Awaiting scan after high ca125 test

    I’m sure there was someone else here recently with an elevated ca-125 and all was well. I had to have the same test & although mine wasn’t elevated I remember the horrible wait. I also remember reading how common it is for it to be elevated.
    You are young still, it’s very unlikely to be anything bad xx

  6. #6
    Join Date
    Jun 2014
    Posts
    15,715

    Re: Awaiting scan after high ca125 test

    I can't really add any more to the excellent advice you've been given. It would be so good if we could all "fast forward" to these scans and avoid the wait which is the very worst bit and yes, you're going to be tormented by the what if thoughts...but they are just what if thoughts and not actual fact. Dr Google will fill you full of even more fear so you know that you want to avoid that option like the plague.

    It's a question of getting through the hours in any way you can and keeping very busy with anything other than googling. I hope you have decent family support and please just use here as somewhere where you can express anything you want as we all "get" what you are going through and will try to help in any way we can xx

  7. #7

    Re: Awaiting scan after high ca125 test

    Thank you everyone. It's a real head mess... Even objectively I know it's a bit worrying but at the same time I know there's nothing really I can do until I know what's going on. I keep telling myself it could be caused by other things than the worse... But it always comes back to the "but what if?". I'm dreading the scan just as much as I want it over and done.

    I actually wasn't worried about having the blood test as I *thought* it would be OK. OC had crossed my mind but I thought I was only going to the Gp through an abundance of caution. So I didn't even tell anyone I was going to the Gp!

    WorryRaptor - that must have been stressful. I'm so glad it was all fine in the end though. Xxx

  8. #8
    Join Date
    Mar 2018
    Posts
    500

    Re: Awaiting scan after high ca125 test

    Hi!
    I was here at the beginning of the year with a raised ca125 too. I swear, I think that blood test should be banned in women who haven’t gone through menopause yet! It caused me so much worry for several months, and I learned so much about the unreliability of this test in younger women.
    Firstly, in pre menopausal women, a raised ca125 that is less than 100, equates to a risk of cancer of approx 6%…so a tiny risk!
    Secondly, were you on your period, or ovulating when you had the blood test done? As this significantly raises your levels.

    I had a raised CA125 of 57 in January.
    I had AAAALL the scans….abdominal ultrasound, transvaginal ultrasound, colposcopy and hysteroscopy. All they found was “either adenomyosis or a small fibroid”.
    They rechecked my CA125, and despite clear scans, my levels had risen to 88!
    Now, both times I’d been tested, I was on my period. They wanted to check my levels again in another 6 weeks, so I made sure to book in at a time when I wasn’t on my period this time. And guess what…my levels came down to 25!!!
    So it’s safe to say, I am not a fan of this blood test! I was told by the consultant that it is normal to see fluctuating levels in women who are still menstruating, and she wasn’t concerned by my levels at all.
    I was also speaking to a lady who’s ca125 score was over 200, and her scans etc were all fine too!
    Alot of ladies with raised ca125 actually find they have IBS, endometriosis, fibroids….or are simply just menstruating or ovulating when the test was done!

    A ca125 level as low as yours, at your age, is not at all concerning.
    Last edited by Limeslime; 17-04-22 at 22:25.

  9. #9

    Re: Awaiting scan after high ca125 test

    Hi limeslime - thank you so much for your reply.. I'm so glad it's all OK for you. But wow what a horrendous few months you had! I read it could be caused by menstruation but have never seen anything about ovulation.

    I was bang in the middle of my cycle, so could be related to ovulation I guess. Two nights before my test I had a lot of pain in my lower left side - that I've never had before. I thought it was somehow linked to ovulation... But not normal for me. Plus I saw I photo of myself and I looked pregnant. Im slightly on edge about oc as I have had a lot of fertility treatment in the past.
    I have one week until scan..!!!

  10. #10
    Join Date
    Mar 2018
    Posts
    500

    Re: Awaiting scan after high ca125 test

    It’s also possible that you have an ovarian cyst which is complete benign. That can also cause raised ca125 and bloating.
    To be honest, if you had ovarian cancer, I’d expect to see your CA125 levels in the high hundreds! (I believe it can go up to 10,000)
    I read that even with stage 1 OC, ca125 is usually atleast 125!
    Honestly girl, your levels are soooo low, that the likelihood is that this is a completely benign cause.

    But yeah, ovulation can cause raised ca125 because the ovaries are being stimulated, and given that your levels are only slightly above normal range, I’d say this is a very strong possibility!

    Could the bloating be dietary? Perhaps IBS or some food intolerance? Those issues can also cause raised ca125. Basically, any inflammation in the pelvic/abdominal area can cause ca125 to rise.
    I think this blood test has its place in certain groups of women but shouldn’t be used as freely as it currently is as it causes alot of unnecessary anxiety, and GPs need more knowledge regarding avoiding it during certain times in a woman’s cycle!

    Good luck for your scan, I’m sure you’ll be reassured! The waiting is the worst part, so try to do things that make you happy in the meantime!

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