Raised ca125

[Samanthauk]

Hi, just looking for some reassurance I think.I have been referred to gynae on a 2ww today. My ca125 level is 72.

I had a pelvic MRI 4 months ago due to back pain which showed fibroid uterus, a small Nabothian cyst and said no abnormal pelvic masses.

I was told when I was 15 after a laparoscopy that I had endometriosis. I had one child when I was 20. I also have adenomyosis and have struggled with infertility in the last 10 years (I'm 45 now)

I'm sure that I still have endometriosis, my periods are heavy, clotty and painful and although ultrasound scans, a hysteroscopy and MRIs have not shown anything in the last 5 years, I'm terrified that I have cancer.

Has anyone been in a similar situation?

[Sara0102]

I honestly don’t think it’s cancer.. maybe endo as you had it at 15 also MRI is a topper to pick up sinister things like cancer… it’s good your been seen quicker if nothing comes out of it at least you have peace of mind x keep us updated chick xx

[h0lli3]

Yes - when I first had issues with back pain and had an abnormal scan my ca125 was 36 so normal. Then issues got much worse and scans showing lots of abnormalities which they weren't sure if endo and ca125 was 146 - they even said I had a polyp, a dermoid cyst, endometrial hyperplasia. Laraposcopy confirmed everything was non-cancerous, stage 4 endo and that was the reason my ca125 was high. 30-32 years old also with adenomyosis and PCOS, it still took over 2 years for that confirmation by laraposcopy. The risk formula is something like age x abnormalities x ca125 result (could be slightly wrong). My 2ww referral was cancelled by the hospital twice so just had to wait in the normal clinics.

[AR2008]

I agree with Sara0102- It seems likely that your Endo has flared again. My CA125 was 163 so I was sure I had cancer. My GP gave me that pain of death conversation- after they found a 11cm cyst on my ovary via a ultrasound. Then I went to gynaecology on the cancer pathway and had an MRI and within 2 weeks, they told me I had Endo.

My gynaecologist told me that the CA125 test is great for early detection of cancer. But people with Endo and other related conditions often have inflated results on that test. So they will give you a cancer marker blood test which is much more accurate to put your mind at rest.

Wishing you lots of luck and I hope you get the answers that you want!! xx

[RosieFalkor]

My CA125 was raised and scans weren't showing much at the time (they didn't know I

Had Endo then) so they did repeated blood tests every few months and it kept going up and down between 85 and 45. Its very normal with Endo. I was told typically with cancer it will be in the several hundreds or even thousands.

[Illyria_1]

Same as the other people that replied, I was told the same as in I had raised ca125. Before i had an MRI to confirm i had severe endo. My 3 blood tests showed varied levels (between 120- 180), they wanted to make sure it wasn't cancer through the MRI, which it was not and I was told by my gyno that people with endo have raised levels - however if its cancer it's likely in the thousands.

It does not take away the worry until they can confirm its not cancer, the only thing I would say is that they seem to take possible cancer more seriously than endo. Take care of yourself and hope your results are clear

[Rainbow2468 in reply to Illyria_1]

Yes i was told ot had to be in the thousands to be cancer too.

[Rainbow2468]

Hi yes my ca125 was 55, they said might be a n overian tumour at the doctors, totally freeking me out but, three gynecologists and one ultrasound consultant told me not to worry it wasn't high enough. Endometriosis periods, cysts, adenomyosis and fibroids can give us a raised level too. Sending you a big hug x