CA125 confusion

Posted , 5 users are following.

Hi 

Back in April I had a CA125 test that resulted in a reading of 122, I had an US and a TV  showing only ovarian cyst no concern adenomyosis and recomend of hysteroscopy. On 28 April I had hysteroscopy, she took biopsy and the results were adenomyosis with a not worried about hyperplasia she inserted a marina my bleeding stopped as she predicted, and she said in my last visit that the marina was doing its job and thinning the uterus the only thing she wanted now to repeat was the CA125.

So on Monday I repeated the test, Bearing in mind the last one was 122.

I have called for the results everyday I am so concerned, today i spoke with her secretary who didnt know how to read the results but this is what she said.

66k U/L  0-35

anyone help me please does this mean it has  gone down?  

Sorry to be paranoid but I cannot sleep thinking I have some dreaded news coming my way.

I am currently premenopause hormones are wreaking havoc, cant make a single decision without trauma involved!

I also suffer with Ulcerative Colitis or Inflammatory Bowel Disease so any stress is not helping my cause!

sorry  

Amanda

0 likes, 4 replies

Report / Delete

4 Replies

  • Posted

    Hi I do know the normal ranges of a ca 125 blood test are between 0-35 so this is what you can see on the right so it looks to me your level is now 66 which is fab if it was 122 before.did you have a hysteroscopy while under it awake?mine was too painful we tried but he used no local anaesthesia so I have to have a GA now and I am scared and also having the mirena fitted.take care and don't forget any inflammation in body and you have inflammatory bowel disease can raise ca 125 levels I'm sure you're fine xxx

    Report / Delete Reply
  • Posted

    Amanda,

    First, you have learned not to get results from the office staff so I won't lecture you about that ;-)

    It is normal for the CA 125 numbers to come down gradually.  66k U/L means 66 kilo units per liter.  So your numbers are basically 1/2 of what they were prior to treatment.  Being perimenopausal the hormones can really complicate things.  You need to hear this from your Dr. but I'm sure she will monitor you for a while to make sure your numbers continue to drop but just because it's still high is not a cause to worry.  They don't jump overnight and they won't fall overnight.  My hormones were so out of whack when I was perimenopausal and I can understand your concerns.  BTW my CA125 was off the charts but no cancer at all.  Sounds like everything in your case is going well.  Your Dr. was wise to follow up to make sure things were going back to normal but it takes time. 

    Now is your turn to be wise and speak only with your Dr.  It's normal to be

    concerned but the Secretary should not have given you those numbers.  It's cause you more worry than if you had to wait to get the call from your Dr.  Follow up with her only.  Your UC and IBD will hopefully calm down too!

    No apologies required.  We all need a hug now and then so consider yourself HUGGED!!  biggrin

     

    Report / Delete Reply
  • Posted

    Hello,

    Wonder what your doc said to the recent value?

    CA125 is a protein and it is a good puzzle piece in an overall investigation/treatment, but never can be seen on its own alone, and never an individual value anyway, it needs follow up testing, doc done perfectly by the book.

    Also some healthy people just have elevated values (hence the urge to re-test and see its fluctuation, especially if RISING SIGNIFICANTLY, talking 100s into 1000s), others have cancer and CA125 is completely normal.....just saying not to put too much weight on one puzzle piece.

    CA125 value a good blood protein puzzle piece, but never a sole value on its own.

    What is worse:

    depending on which test (brand) is used in the lab, the values change within the same sample quite significantly; (the trouble to fine print this test change and possible impact on number value on each test result for years to inform docs, yes, I am an old lab lady done 1000s of CA125)

    Slight changes are anyway normal withing testing, e.g. if I take today a sample and run the test it is 119 kU/L, if I run it tomorrow it might come out 126 kU/L = U/ml with the same test method/brand and same sample.

    Just the normal daily variation.

    Ok, 122 and 66 do not fall into daily variation of same sample same test/brand.

    Having said that, was the CA125 performed at the same lab? (which most likely is if the test was done by same doc, same location, sent to same lab. But sometimes a test is done in hospital and one at docs office...)

    I am very sure, you will be re-tested in half a year time and this would be perfectly fine, nothing to worry about, very considerate procedure.

    If your value stayed between 60-120 it will be called 'no change'.

    At the moment, a 66 is better, lower than 122.

    So this should make you relaxed. It has at least not risen.

    CA125 is used as an ovary cancer or endometriosis marker, but needs constant follow up if elevated to see

    a tendency  in blood value

    combined with most important the direct investigation of the ovaries like you had with ultrasound.

    Some women simply have elevated values as their normal values.

    Some don't and this is the job of the doc to combine all puzzle pieces and do follow ups to interpret the single or multiple value of a CA125 correctly!

    There is unfortunately no way by having two numbers of CA125 to interpret what they mean.

    From here in the forum what you described the level looks perfectly fine, not risen.

    All the best!!!!!!!

     

    Report / Delete Reply
  • Posted

    Hi Amanda,

     2 years ago I was diagnosed with Ovarian Cancer.

    Bit bit of a stuff up with the hospital not telling me my CA125 levels were quite raised from normal (from 9 to 80), a scan 6 months later showed a lump 5.2 X 8cm on my left ovary. Surgery followed about 6 weeks later.

    It confirmed it was cancer (grade 3C). 

    Went through chemo, had a stroke during my first course but survived that. Chemo was given through my stomach (a new way with my hospital). I was the first person to have this done there.

    I had issues of and on towards the end of my chemo with diarehea, and tummy cramps for about 3 months, and was in and out of hospital. Then was admitted again, stayed over night, let out the next day, and was back in there 5 hours later. The pain was extreme, and my weight had dropped from 60kg to 42 kg.

    They didnt know what was wrong, and because I was on blood thinner due to the stroke, they had to wait 5 days before they could opperate to find out what was wrong.

    It turned out the chemo has ruined my gut, and had 40cm of bowel removed. 4 weeks later I was out of hospital, very very weak, and still at 42 kg. I admitted myself a week later for another week. But was still very weak, and had to have home help for months later.

    A year and a hald on after I stopped my chemo, my levels are raised again. Sitting on 60. I beleive everyone has a different level the CA125 raises to, and my were 80 with Ovarain Cancer.

    I have a CT scan later today to find out whats going on.

    Yes Im bloody scared. More scared for my 6 yr daughter than I am of dying. I have no family, just friends, so worried about my daughter because of this. I need to see my lawyer and set measuers in place in case I die.

    Im taking between 2000 and 7000mg of Vit C a day, and feel quite good in my body. I was very tired about 3-4 months ago, which is the same as when I has OC. But now Im sleeping right through the night, (havent done this for years and years).

    I no worrying about it wont help, but I cant help it. 

    It great to find this site, so we can talk about our issues.

    Stay strong is all I can say.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up