Ovarian cysts, raised CA125 and 2 week referral

[WorriedaboutOC]

Feeling very anxious right now, and wondering if anyone has had a similar experience with a positive outcome.

I had an ultrasound this week because of having had a couple of heavy flooding periods. Womb and everything looked fine, but incidentally they found cysts on both ovaries, and I was sent for a CA125 blood test.

I've had a call from my GP this morning to say ca125 levels are slightly raised (48) and this means that she's referring me to gynecology on the 2 week pathway.

She was v reassuring and said its still unlikely to be cancer: she went through the US report and said there was a small cyst on each ovary (1.3 x 1 cm and 2.1 x 1.6 cm). The report said one looked like a hemorragic cyst and the other either a hemorragic cyst or an endometrioma. She said nothing on the report looked suspicious, and that the cysts might resolve on their own, but that because of the raised ca125 it was an automatic referral on the 2 week cancer pathway. She said there were many benign reasons my ca125 levels might have been raised, including the fact that I was on my period when the bloods were taken.

Despite all this, I am freaking out!! I can't concentrate on anything and I'm worried sick. I want to burst into tears when I look at my children 😞

TL;DR
Has anyone had a similar experience (ovarian cysts, raised ca125 and referral) that turned out to be nothing serious?

@PollyThePixie oh no, I'm sorry, I thought I was being helpful!
I'm actually really upset my gp gave me that info then, I've been thinking I must be fine as my levels were only in the 20's a few weeks ago.
Waiting on my hysteroscopy results at the moment but didn't think I had anything to worry about.

Sorry to hear that polly the pixie

Happy, it’s a very common misconception and is always said in good faith. I take it with the spirit intended. I’m sorry my post will have you worried now but I wasn’t referring to numbers like 20. I was referring to numbers above 35 and should have said so.

Im sorry for not making things clearer.

@worldwidetravel2017 , thank you. My cancer was caught early and I’m doing great.

Im very glad to hear

My ' number ' is not great
Although under 100.

But it was done when i had my period
Which can apparently effect it

I had another done which im waiting for

But also been urgently refered for multiple scans

@PollyThePixie I'm so glad to hear you're doing well!

@worldwidetravel2017 I hope you get the best help and it's good news!

I had a haemorrhagic cyst on US and it turned out it was in fact and endometrioma. I also had slightly raised CA125 (not crazy though) I had surgery and have stage 4 endo - no cancer.

My levels were 113. It turned out its huge fibroids, adenomyosis and ovarian cysts.

Hi all, sorry - haven't been checking this thread recently as there's nothing else really I can do other then wait for my repeat scan.

@worldwidetravel2017 I hope you get some reassuring answers soon. One thing I've learned is that ca125 can be raised for so many reasons most of them benign.

@HappyKatieA having extensively googled all this over the last month or so think that thing your GP said about ca125 levels over 200 being more worrying is to do with the fact that apparently, in pre-menopausal women, levels up to 200 are still more likely to be caused by benign conditions (benign cysts endometriosis, etc). I've read that in the online guidance for several UK health trusts, so you can put some faith in it, I think.

As @PollyThePixie says, that's not always the case, of course, and plenty of women with OC in fact dont have raised levels at all, but I think the most likely cause of raised levels does differ a bit depending on whether youre pre or post menopausal.

The conclusion I've come to, having spoken to several HCPs about this, is that high levels are a sign that an ultrasound scan should be done, as there's likely some kind of inflammation/irritation in the pelvis -- then if the scan is clear, or shows some other likely reason for the high levels, the urgency dies down a bit. Certainly the doctors/nurses I've spoken to all say that the ca125 is very sensitive and nonspecific, and that an ultrasound scan tells them much more.

I'm still pretty concerned about my levels, but I've been told several times that my scan shows classic small benign hemmorhagic cysts/possibe endometrioma, with no worrying features and that, even with the raised ca125, the best course of action is juts to rescan in a few weeks. I'm going to have to trust from this that they know what they're doing and if the ca125 alone was that concerning they'd have referred me for more urgent investigations, because that's literally their job, and they have far more insight onto what these things mean than I do.

Of course this doesnt stop me being a nervous wreck occasionally! 😅

Thats reassuring
Both my scans are next week

The only thing I'd say (as I noticed earlier in the thread is that you said you didn't think you had endometriosis) is that an endometrioma is often a classic symptom of deep infiltrating disease. An MRI should clear up what it is. If it's an endometrioma it won't go on it's own and will likely only get larger so would definitely need regular monitoring as you don't want that thing bursting! They tend to remove them over 5cm.

My result for next urgent ca125 was 70 something
Instead of 90 something

( did another yesterday when not bleeding)

Scan found a small fibroid
I have a ca125 retest next month

I am 52 and went to the GP as I have indigestion and weight loss. Had bloods. CA125 40. Have been referred for the 2ww. I want to cry with stress.

I had a coil inserted in Dec 22 and my ovaries were fine then the gynae said. So what could this be??

Due to go on hols next week. This is awful timing. I want to vomit.

40 isnt that high

4 ovarian cancer its ' normally ' over 200

Mines 70 - nearly double yours..

It can be higher due 2 inflammation

Its not always cancer
.

Given higher ca125 - u could ask 4 transvaginal scan to check ovaries / see if a fibroid etc

Always had ya smears ?
Ever had ya boobs checked ? - breast cancer is something that raised ca125 can be - yours is only just abnormal tho - only by 5 - it happens sometimes

Re weight loss - ever had / done a qfit / poop test ?

Thanks @worldwidetravel2017 x

I have submitted a poo test too.
I have an urgent endoscopy next week. Mammogram a few months ago was clear.
Other bloods ok.

I am trying to hide it from my teens but it’s so hard when you imagine the worst. I am still processing the phone call.

Thank you.

With ca125 of 40 - its unlikely to be anything too bad
Its only 5 off normal
Many ppl get results way way way higher

Good that youve done a qfit test etc

Have u stopped getting periods ? If not - where was your cycle when u tested..
Period get can raise it

I have very erratic and ‘small periods’ as am perimenopausal and have the mirena coil. Last proper ‘bleed’ was mid-June In dec I was found to have a large fibroid.

Smear Dec 22 clear

Was fibroid removed ?
If not - could be reason for 40 result
' normal 'is 0 - 35
Your only just out of that

I spoke to a Macmillan cancer nurse this week

Honestly if u rung them - theyd tell u not to worry too much

Re test ca125 in a month ?

Mines being retested next month

Im having a gastroscopy - that's 4 other reasons

Had a colonoscopy
& transvaginal scan