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Raised ca125 and symptoms

12 Aug 2018 23:01

Hi Eveyone.

i am new to the forum. Just looking for some other stories similar to mine really. I went to the doctor after noticing pain in my lower tummy for quite some time along with regular bloating. I had blood tests done and results came back same day with a raised ca125 of 38 and elevated ESR levels. I am aware the cut off is 35 so 38 doesn’t strike me as drastic but along with other symptoms I am quite worried. The past few days my tummy pains have since carried over to my lower back and I feel constantly nauseous (near enough on the verge of throwing up but never do) however I’m not sure if this is a symptom or from nerves. I have an appointment with gynaecologist for scan 20/08/18. 


Raised ca125 and symptoms

12 Aug 2018 23:29 in response to Mwb

Hello - I had exactly the same situation back in January this year but after ovarain scan, transvaginal scan and abdominal scan was told nothing to worry about.

I kindly requested my gp in April to redo the ca125 test to ease my anxiety and to find out if it had returned to normal level even though it was only slightly raised. She said no as there was really no need for such concern.

now 8 months down the line and more than 10 Gps later at same surgery I have elevated ESR of 32 and have found a lumpmin my breast.

I am 47 and absolutely terrified for the breast clinic tomorrow.

My advice to you and everyone else out there is DON'T be like me and accept what the GP tells you. Mine told me nothing to worry about and no need to re-test.

Once your initial scans are over i would INSIST they keep regular checks on you , i.e. ESR, CA125 etc

Good Luck with your scans in the coming weeks xx

Raised ca125 and symptoms

13 Aug 2018 12:59 in response to SJ71


thank you for your response. 

Was you also getting these symptoms or was it just the ca125 test that caused concern for you and gp?

i hope everything is fine with your latest scare.


Raised ca125 and symptoms

9 Apr 2019 22:30 in response to Mwb

I have no lady bits had them all take away at 46 I am now  66 yrs.Had blood test because  felt abit under the weather  , when doctor got result found CA 125 was high 100. Had ulchsound  found nothing . Doctor  said he his going look into to see what other test I need xx has anyone  out had the same experienced. 

Raised ca125 and symptoms

11 Apr 2019 18:28 in response to Reed

Hi All, I had an elevated level in July 2018 of 50 and had all the relevant scans to be told everything is normal. Yesterday I received my latest result and the CA125 is now at 71. Now being referred for further scans and feeling anxious. Has anyone experienced this and still come away with normal results? 

Raised ca125 and symptoms

23 May 2019 20:43 in response to angela1987

Hi all 

I am really concerned as during a routine MRI for unrelated issue in aug  last year (2018)a cyst was found on my left ovary bearing in mind I have no womb having had a hysterectomy for endometriosis kept my ovaries as I was 27 I am now 36. But for the last year I have felt rotten at the time I had a ca125 done which was 35 and just told it would go away however my symptoms have just gotten worse and worse bloating tired all the time can't eat sick and constipated I keep getting told that it's ibs I have finally gotten the doctors to listen and repeat bloods and they have booked a scan but really concerned about results due to symptoms can anyone give me advice thanks x


Raised ca125 and symptoms

1 Jun 2019 02:31 in response to Reed

Hi there. Like you I had full hysterectomy (10 years ago) I have been told j had raised CA125 and had a retest yesterday. Wax not told what level it is raised to. I am beside myself with worry. Have they found the cause ic your raised levels?

Raised ca125 and symptoms

1 Jun 2019 08:34 in response to Nanniep

Hello all,

My mom is 73 and has been really unwell since January this year. She was diagnosed with a vaginal prolapse and because of this the GP pretty much ignored her other symptoms. She paid to see a gynaecologist privately because of the waiting time on the NHS and although she needs an operation for the prolapse he wasn’t willing to do this without the other symptoms being ruled out first. This was 6 weeks ago! 

Since then she’s had endless tests one of which was CA125 bloods and her level was 135, which was a shock and upsetting for us all. Her ovaries and womb, colon, liver and kidneys are all clear, but she has lumps all over her peritoneum. The gynaecologist has told her he suspects its primary peritoneal cancer. She had a biopsy last week and we are waiting the results. 

It’s incredibly hard to be patient, in one hand we want the results on the other we don’t want the news we think we’re going to get. Moms lost over 3 stone in weight over the last 2 months, is bloated, has no appetite and is struggling to eat as she feels sick when she does. She’s  also in a lot of pain although we are unsure if this is from the suspected cancer or the prolapse! 

As I had never heard of peritoneal cancer I googled this and it has all the signs of ovarian cancer, including raise CA125. It’s very rare but if you’re still unwell but you’re ovaries etc are clear it’s worth asking about this as well. It only gets diagnosed at stage 3 or 4 as it’s one of the cancers that you only get symptoms when it’s advanced. 

Mom is literally deteriorating by the day, we are all so worried and the waiting is incredibly difficult.