Ca 125 and menstruation

First of all I have to say what a great site this is.

I am at the waiting for my scan stage after a Ca 125 test result of 57.

My GP did the test after I went with a raft of problems and niggles which have been rumbling (literally) for a couple of years now. I'm going to be 46 in a month, have 3 children 28, 12 and 8, the last c section. I also had an umbilical hernia mesh repair about 7 and half yrs ago when my youngest was still a baby.

I'm just under 5ft 2, weigh 7 stone 10 and am quite active generally and I do some weights for a bad shoulder every other day, plank (for hernia) and walk the dogs every day. I also go running with them about 3 times a week.

I was sent home with my result on a Post It note so that I could check it out online. My GP said he didn't think it would be anything sinister but also said that he wasn't sure what other problems could cause a rise in Ca 125.

Probably like everyone else who has had this result I spend a fair amount of time every day Googling this subject! I've read lots of study reports and results about a raise in levels during menstruation because my blood was taken on the 4th day of my cycle. The studies do show that there is often an elevation but the studies all had a cut off of 35.

I went back and asked for another test on day 17 of my cycle, although my GP understood about the menstruation issue he didn't think it made much difference and said he was happy for me to have another test and this time the result was 31.

My transvaginal scan is tomorrow. I'm slightly concerned that it will be inconclusive because my womb is folded and tilted and the last time I had a scan for my increasingly heavy periods they couldn't actually see my internal organs!

I spoke to a really helpful lady from the help line because I wanted to know if there was any point in having the scan given the lower test result, and was told that I should go as a raised level is a raised level and they can go down even for people who have been diagnosed. But I would be interested to know if anyone else has had this experience and what the outcome was.

My symptoms:

about 2 years ago my periods suddenly became very heavy, with clots

relentless discomfort and sometimes nausea after eating - burping, rumbling tummy, often feeling as though I need to poo and wind (lovely!)

pain in my back during ovulation going through to the front and side

some leakage from back passage

alternating diarrhoea and constipation

9 Replies

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  • Welcome to this site which is a great source of friendship and wisdom.

    It IS a site for ovarian cancer.

    You have a raft of symptoms, two of which (CA 125 - (the upper range of "normal" is understood to be 35) and abdominal discomforts) could be something to do with that, as well as other things.

    Until you've had further investigations, and the scan is one of the obvious ones, you're not likely to be able to rule it out.

    I must stress the importance of having the scan, whatever difficulties it may pose in interpretation, as it's always best to rule out, hopefully, worst case scenarios.

    Waiting for scans and the results is always an anxious time for all of us, but don't spend too much time on Dr Google - you'll find you have every illness under the sun!

    I must say I think your GP was a bit cavalier sending you off like that with a post-it note and an invitation to use the internet...!

    Wishing you all the very best with it all. Let us know how you get on.

  • Endometriosis is the first thing that springs to mind. Irritable bowel? Hard to do I know but my favourite epitaph is 'I wish I had spent less time worrying about things that never happened'.

    Maybe I only learned that after I was diagnosed, but 57 is not v high & if it turns out to be the worst news, it may be early days & easier to treat.

    Much much luck

  • Hi there I am glad you are having the usual scans to make sure this is nothing sinister. This is a site for those with Ovarian Cancer, I regret I cannot help with the fluctuating results of 125 but do speak to your gp. Most consultants and gps will tell you to keep away from Mr Google so I am a bit worried you were told the opposite. I hope everything turns out well for you.

  • I hope it's just benign.....but if your scan shoes anything unusual make sure you get an oncology surgeon to do your surgery just in case....I didn't and now I have to live with that mistake. Mt CA 125 was 57 ....Ive just had my 4th round of chemo. yours may be benign but DO NOT take chances if they say you need surgery. GOOD LUCK and hope all your tests are negative 💙💚💜❤

  • Hi Supernurse

    What were the symptoms that led to having the CA125 test? Did they do more Ca125 tests after that one?

  • I forgot to mention...my cyst on the scan went from 3.4 cm to 15cm in 5 months

  • Hello All, thank you for your replies and comments.

    I had my scan. As predicted the sonographer couldn't see anything so I had to empty my bladder and have an internal.

    It took AGES and was hideously uncomfortable and painful because it was still a struggle to find either ovary. They asked me about my symptoms and made the comment that it all sounded bowel related rather than ovaries - I had to agree. At the follow up appointment the GP said both ovaries were clear but I had fibroids, but quite small and nothing to be overly concerned about.

    I continue to have problems at the rear end and this will be the next route of investigation.

    I had one last Ca125 test on day 22 of my cycle and it was mercifully down to 21 so I am not worrying about it too much. I get the feeling the GP is a bit more concerned and after a bit more research I can see that bowel and ovarian cancer are linked and Ca125 is routinely used in that field too.

    GP decided it was a good idea to have a smear test too and after 2 and a half weeks I am still waiting for the result of that.

    It's all probably nothing, or IBS or adhesions but the bowel issues are enough to get in the way of life and don't show any signs of improving regardless of what I eat.

    So nothing conclusive yet. However, just like me there are probably many other women who have had the wind put up them with the dreaded Ca125 test and like me will land on this website. At the very least I hope my post will answer some questions and I will report back!

  • So glad your ovaries are okay.....better safe than sorry....unlike me....my sugeon said it was benign and it was cancer. sounds like you are in good hands!!!

    I was asked about ca125

    I asked my Dr to test me because my friends sister died of leukemia at 28years old and my friend told me about ca125....I paid to get it done with my other blood work.

  • Hello,

    I am so glad that all is okay. I had my ca-125 just before Xmas it was 41 my only symptoms was my cycle had changed (i do think this is stress) and my back/hips hurt (I have a heavy toddler and doing a lot of weights at gym) Anyway they sent me to Gyno and scans all came back clear. I am due to have another ca-125 in two weeks so hopefully it will gone down. I was told i had a little bit of PCO on my right but all was clear and they will send results to my doctor. It pretty much ruined my Xmas i now have bad anxiety and got rushed to hospital a couple of weeks ago after waking up having a panic attack.I'm only 35.

    I wish you all the best xxx

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