Ca125 count of 59

Hi I went to the gp as I have been suffering with severe pain in the left of my abdomen mainly but had always put it down to my IBS. The pain got so severe I couldn't walk so the gp ordered a blood test and unbeknown to me they were checking my ca125 . The level came in at 59 but I am always feeling bloated gassey and nauseous. The pain never really goes away it just dulls and can be on either or both sides .I have now had a repeat blood test and a transvaginal ultrasound. I am worried sick ...all the info I have read regarding the ca125 count where ladies have a diagnosis of ovarian cancer have been much higher in the hundreds ...has anyone else had a lower count andcthevsame symptoms?

29 Replies

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  • I should add I am only 42 but constantly suffering with indigestion and heartburn as well

  • Hello Loulou1810

    I don't want to worry you but my CA125 was 67 at diagnosis...you do need this checked out but take heart that's exactly what they are doing for you...put your trust in your team- they sound like they are really on it.

    Even if it all turns out it was IBS after all...at least you will know nothing has been missed.

    Even though you have not ( and hopefully will not be) diagnosed with cancer..you can still access support through us, ovacome and Macmillan. The waiting is the worst bit..so don't wait until you are climbing up the curtains ask for help and support if you need it. Fingers crossed for you xx Lyndy

  • You are so sweet Lyndy

  • I don't want to add to your distress but my count was 47 and I had ovarian cancer stage 1A serous cell . I had ultra sound and contrasting C.T which all indicated according to gynaecologist that I didn't have ovarian cancer only a large mass on right overie . Decided to have only right overie taken out as gynaecologist was so sure .

    9 days later was told I had cancer 4 weeks later had full hysterectomy omentum and lymph node sample .

    Currently I'm on chemotherapy 2 rounds to go .

    I'm 44 .

    Looking back I had classic symptoms

    Bloating

    Going for a wee all the time

    Feeling full after half a sandwich

    Fatigue

    Large abdominal mass

    This may not be the case for you I'm just giving you my experience and CA levels are not the only diagnostic tool and like me it didn't work so I can't rely on CA levels .

    I hope that you are in the 2 week pathway and get your answers very quickly .

  • Hi thank you both , I have now got to wait a week for ultrasound results and 10 days for ca125 results , the more I talk to people and the more I read it is pointing more to the dreaded but that could be me having an overactive mind

  • Loulou-

    Because the symptoms are so general, it could very well be many things. Keep pushing until you have clear answers on what it is (and isn't). But also try to keep in mind it could very well be something else. Fingers crossed for speedy and positive news coming your way! 🤞🏻🙏🏻🤞🏻🙏🏻

    Best,

    Anne 🌺🌸🌼

  • Hi,

    You probably already know the CA125 is not a diagnostic but is an indicator so a low level will be seen as good but can't be taken as a stand alone to rule out or in. Hope that makes sense.

    My level was also low at diagnosis *I understand that approx 5% are false negatives/ positives that's why all the OTHER tests are so important.

    Ultrasound scans give more detail, then it may be a CT or MRI is needed to provide additional info- each gives more detail if it's felt that a clear You're OK can't be given at that time! Sometimes it needs surgery before a diagnosis or You're Clear is given.

    So you've joined the - "Keep calm, keep breathing, you've NOT been diagnosed" Group!

    It's a special group that we've all been in - lots go through into the NOT CANCER group abd leave this forum and others into the yes it's cancer group however if that is the case then there will then be a plan and you will know what's what if that is the case.

    Write down any questions you have at each stage of these tests.

    Thinking of you

    Take care and keep calm breathing!

    Clare xx

  • My CA125 was 63 on diagnosis. I was told by the sonographer immediately after my scan that there was a high chance that it was ovarian cancer. Unfortunately he was right, but it was caught at stage 1A and I am still NED (no evidence of disease) 5 years and 5 months after my operation.

    I hope you are not suffering from ovarian cancer, but if you are, there is still hope.

    Best wishes,

    Barbara

  • Brilliant reply Barbara. Lots of positivity xx

  • Hi babe,

    I totally understand your fear. My ca 125 was only at 30 when I was diagnosed with stage 111c ovarian! The transvaginal ultrasound is when the Gyno said something wasn't right. Your concerns are valid and please don't ignore these signs, you are doing the right thing! Can you ask for a ct scan? Colonoscopy?

    Xo

    Emilee

  • Loulou, I had symptoms like yours for two years! I went to 5 different doctors and was fobbed off by all of them. I had TV ultrasound which showed nothing. Endoscopy, colonoscopy, bladder all scoped and nothing! Because the OC I have is epithelial and doesn't invade organs until it kills you. So, my CA 125 could have been like yours when the symptoms began. I was diagnosed in the ER (I live in US) when my abdomen swelled up to a 9 month pregnancy in 2.5 days!!! So, keep after this. Get answers!! Get a proper diagnosis so you know what you're dealing with.

  • Thank you all for your responses the sonographer wouldn't tell me anything she just told me that I must see my gp in a weeks time , fingers and everything crossed

  • A well trained sonograoher etc one shouldn't give you information as even a large mass could be perfectly benign. My first scan (CT) was Thursday and my GP rang me with the results on the following Wed evening.

    Her words were as follows:"There's a reasonably large mass and at this stage we can't rule out cancer so we need you to have some more tests'.

    I thought that was a good response and allowed me to keep calm albeit be a bit nervous!

    Good luck

    X

  • Hi LouLou! You're doing the right thing by getting it checked out. The Ultrasound will tell them a little more. I'm guessnig they will also order a CT Scan. The symptoms you describe could be 20 different things, but one could sadly be OC.

    I was diagnosed at 48. I had what felt like constant 'gas' pains and an occasional pain between my pubic bone and belly button. OC was the last thing I though I had! My CA125 was a 90.

    Hugs and prayers!!

    Jodi

  • My CA125, at diagnosis for fallopion cancer(which is classified as ovarian) was only 15. My tumors were even too small to show up on a CT scan prior to staging surgery. Then, my CA125 was never "normal" after very aggressive IP/IV chemo for 4 months. BUT, I got into remission after the chemo. So, don't put too much faith in that one test. It is wrong so many times for so many people. Other factors like inflammation can make it higher than normal range and you should have hope that the IBS is causing the inflammatory response that MIGHT be making yours be high. Keep a positive attitude! We're here for you!

    Karen, Stage 2B, Serous Adenocarcinoma and doing well. Diagnosed only thru a pathological report after routine hysterectomy at age 54 NO PRIOR SYMPTOMS!

  • I recently had tests and my doctor did a CA125 too - it came back as 85 but I do have fibroids which means this could be the reason why my CA125 is a bit higher than it should be. I had an MRI scan this morning and now have to wait for 7 -10 days to hear what they think.

    Chin up and remember there are a lot of other reasons for an elevated CA125 reading.

  • Hi all got a call from gp this afternoon scan results were back , there is cysts in the cervix and "a couple of lumps" in the womb but due to an enlarged bowel they couldn't see the ovaries . Doc is fast tracking me to gynae as she says further investigation is needed

  • My ca125 was 67 just before I was sent for an ultrasound. The results were faxed to my GP immediately as it was obviously a bad result. The only symptoms I had were nausea and difficulty eating. I was diagnosed as 3c clear cell and have now been told that my ca125 is not being monitored because it was low at diagnosis and so is not a good indicator for me. I hope you can draw comfort from the fact that you are having to wait a week for your results.

  • Hi ty but doctor called me today so only 24hrs after the scan

  • Keeping fingers crossed for you.

  • I should have been diagnosed when my CA125 was 30....having gone up from 6 (a private test) but wasn't. Try to be pleased they are pulling out all the stops. If it IS oc it will be better to be diagnosed early...but it may well not be...good luck! x

  • Referal now done to the hospital strange process though appointment is for 13th April but it's got to be triaged as it's marked urgent , once the consultant has looked at it it may be "bumped" up the list

  • I thought fast track meant you were seen by the hospital with in about 2 weeks (don't quote me!)

    This is obviously the way things happened for me and its not going to be the same for most....I had blood test and it came back with ca125 of 85 got an appointment to gynie at hospital within 7 working days and then had the MRI within another 7 working days.

    Anyhow....fingers crossed that you can get seen sooner xx

  • The way it works here is you have to have a general appointment then the consultant looks at it and decides to fast track you so although my appt is 13th April it's got to be seen by the consultant first then will be rescheduled for 2 weeks or less

  • Oh I see.

    Let us know any updates x

  • My diagnosis ca125 was 235 is this really bad ?

  • Hi harleeboo , it is high but can me anything as I am learning through all the lovely people on here , is it the first test ?

  • Yes that was diagnosis level ,had major debulking surgery and now 3rd chemo this week but don't know if ca has dropped

  • Oh right so you have a diagnosis , then I'm sure they will 're check your levels at some point hun .be comforted hun that they are dealing with it good luck x

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