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

Hiya,

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.

x

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. 

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? 

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

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?

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. 

Hi angela1987

my story is a little like yours, my first blood test of ca-125 was 67 which I paid and got a scan and it was normal, they repeated the bloods and now it's 77. They had referred me to gynaecology, I'm just wondering how you got on? X

Hi, 

For me, thankfully, I’m absolutely fine. They don’t know the reasons why mine increases or why I have elevated levels- apparently some people just do. I don’t have endometriosis and there’s no cysts on my ovaries. The gynae consultant recommended I go on the pill and started me on one called rigevedon (i think that’s how you spell it). It didn’t agree with me so I’m now on lucette and it’s jinestly helped a lot of problems I was having. Weirdly they told me there’s no need to have further blood tests to check my levels in the future. I hope all is okay for you. Best wishes to you x 

Hi how did you get on with all your tests? My CA125 was 91 and I was sent for pelvic ultrasound and they couldn't find anything wrong so I am waiting 6 weeks for repeat CA125 blood tests to see if my levels are up or down? Even though I've had a scan I'm still worried too.