raised ca125 and ovarian cyst

[Roch2177]

hi

I had IVF in January this year but prior to starting in September 2019 they found a 27mm cyst on my left ovary that was semi solid. Ca125 was 28 at the time and gynae said it was entirely benign in appearance following ultrasound. He said that this would need to be checked regularly to monitor any changes in appearance or increase in size.

Last week had ca125 done again and reading was 39. Had ultrasound this week and sonograpger has said that cyst now 5cm and small cyst on right ovary of 2cm. Results aren't back with my GP yet. Now I'm panicking that I have cancer after reading Google of all places. Driven myself mad with worry and have myself planning my funeral. I'm premenopausal and 38 years old. Really just wondered if anyone else had something similar or can provide reassurance.

I'm so sorry that sounds very scary. I've no personal experience but carry brca2 gene so ovarian things are always a worry. Do you know what to expect next, timings etc?

I'm still waiting for the results of the ultrasound from the GP and its driving me mad. Not sure what is next once I have the results I just want the cyst out of me to be honest as soon as possible.

Not an expert, but for context my mum had Ovarian Cancer and her CA125 was in the high thousands x

Hard to say. It certainly warrants further investigation and that will happen now, probably worth trying to chase with the GP surgery/have a chat with the GP. I don’t know if it’s cancer, not necessarily, but the ‘good news’ is that whatever it is has been spotted. The very tragic thing about ovarian cancer is it’s very often not caught until far too late and women are usually fobbed off with other explanations for their symptoms

I had something similar last year. Have you had a hysteroscopy? I found that very unpleasant and painful as mine was done without anaesthetic so I’d recommend having that done with anaesthetic. It’s very common to have a raised ca 125 and it not be ovarian cancer and lots of other things can raise it like your body fighting an infection.

I've not had a hysteroscopy. But I think when the gp does get the results I'm going to push to be referred on for further tests and investigations. I dont know whether the increase in size could have been due to hormones when I did my ivf. I know the gynae was adamant it was benign at the time.

My ovarian cyst is just being monitored yearly although my last appointment was cancelled. I was very scared about a raised ca 125 but when my result was checked after a couple of months , my ca 125 had gone down to 15 (I think) and was completely in the normal range. I certainly wasn’t feeling unwell when I had the raised result. My GP also told me that although my raised ca 125 was slightly raised, in her experience people with ovarian cancer had a ca 125 score in the thousands. As I said before, if you have to have a hysteroscopy then I’d suggest a General anathestic. There is a campaign group who campaign against painful hysteroscopy, as a lot of women aren’t made aware how painful the procedure is for some women. It’s a quick procedure but not pleasant and I found it painful.

Thank you for sharing your experience with me. It does reassure me that hopefully with my ca125 being only slightly raised that it is because of the cyst or maybe hormones. I will definitely be asking to be sedated if they offer the hysteroscopy aftee what you have told me. I know the GP now has my ultrasound results back. I was told I was going to have a call yesterday but they never rang so I will be chasing them on Monday.

A hysteroscopy won't assess a cyst on the ovary because the camera goes into the uterus. It won't go up your tubes to the ovaries. I've had a hysteroscopy for unusual bleeding and I've also been monitored for 2 years because I had a 3cm ovarian cyst- vaginal scans every 4 months. This was with a top gynaecologist, privately so if I'd needed a hyster for the cyst it would have been done.

CA125 readings are highly unreliable.

They are only 80% accurate in women who have advanced ovarian cancer.

There can be loads of reasons for a slightly raised reading.

Also, ovarian cancer is very, very rare in women under 50. Not impossible but unlikely. If you have had hormone treatment recently the odds are you are just getting some kick back from that.

@Roch2177 I was diagnosed with ovarian cancer last year, a CT scan for something else showed something suspicious in my pelvis which was followed up with an internal ultrasound scan, revealing a large growth on my ovary, and then very quickly, bloods and an MRI. There was no talk of a hysteroscopy.

Of course, they didn't know for sure that the cyst was cancerous until I had a radical hysterectomy, but it was no surprise to anyone that it was.

Have you got the ultrasound results yet? I hope it's good news.

I had raised CA125 cause by endometriosis. Had a cyst caused by it.

Finally got the results of the scan yesterday. GP said that the sonographer wanted to rescan in 12 weeks and redo bloods. The gp asked for another opinion from a gynae and they advised to refer so should receive an appointment in next couple of weeks. Gp said that although you can never be 100% from an ultrasound the evidence does suggest its benign and the gynae would gave tokd them to do an urgent referral if they thought it was suspicious. I do feel a bit more relieved now in a way.

@Roch2177 that does sound reassuring. Hope all turns out well for you.