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?

Thanks so much for coming back, Polly. I'm do sorry to hear what you've been through. But very good news that your risk of recurrence has come down so much, and that you're well and happy.

Thanks also for the apology (which wasnt necessary, but was appreciated). Your initial post didn't give any context, so it did feel a bit like it was aiming to counterbalance the hopeful stories on this thread, but I know you didn't mean it that way at all -- and I am the absolute queen of putting my foot in my mouth and saying the wrong thing, so I'm familiar with feeling like I've said something cack-handed!

My appointment has come through for next Wednesday. I hope this week goes quickly.

I spoke to the GP about my results today. I’m being referred to gynae for an MRI to have a look at my cysts because they’ve got nodules on them and also my endometrium was a bit thicker than it should be. My CA125 was back to 29 so at the higher end but not too high.

I hope your appt goes ok!

Hi Christmascracker0, thanks for the update and great news* *about your blood test. Justbshiws how levels can fluctuate. Hopefully the nodules and thickening are nothing to worry about.

Any idea how long you'll have to wait for your MRI?

Reassuring update:

I saw a consultant this morning. She said she didn't understand why I'd been referred under the 2 week early access rule. She said the ultrasound report showed "very uninteresting" benign hemmorhagic cysts, that usually wouldn't even trigger a rescan and that would most likely go on their own.

She said the ca125 blood test was "pretty useless" in pre-menopausal women as so many benign things could cause it to be raised, and my level (48) was only borderline raised anyway. She re did the blood test for comparison, but said even if it stayed at the same level she wouldn't recommend doing anything other than possibly rescanning in 3 months. She also said they're coming to the end of a big study designed to find a better way to work out individual ovarian cancer risk, as the ca125 blood, while very useful in assessing whether treatment is working, is a blunt instrument for diagnosis and causes a lot of needless anxiety (I can confirm that it does!!)

So, while a teeny part of me is still nervous that my second blood test will come back sky high now, mostly I'm extremely reassured. This was a consultant in a specialist women's hospital, and she seemed totally unconcerned and a bit baffled why I'd been referred.

I hope this helps anyone else going through similar in the future, and frantically selecting for threads on ovarian cysts and raised ca125 levels.

Great update OP - identical to my experience!

Nice update OP thank you. I am pleased to hear the consultant recognises all the stress the CA125 gives, for no good reason a lot of the time.

Aargh. Another update. My second blood test came back at 85 😬so they're going to re-scan the cysts in 3 months. I'm trying to tell myself that if there was any real concern they'd want to do something a lot quicker than that, but obviously my anxious brain is going into overdrive, and i qiah thw number had gone down. The consultant was so relaxed about it... is anyone with experience of this around to help me get a grip?

That should say, 'obviously I'd rather the number had gone down.'

I think mine stayed elevated for a while - can't remember the numbers - but the consultant wasn't worried. Yours isn't sky high - I would be concerned if it was 200+ or something, but at the moment I would try not to worry (as you don't actually have anything to worry about as yet)!

In 2020 I had ovarian pain, a CA125 of 52 and I went for an ultrasound. They told me I had an unusual complicated cyst and seemed very worried about it. My mind immediately went to the worst scenario and a very dark place as my GP seemed very concerned too. At this point, it was the second cyst I had had on the same ovary and the stress was really getting to me. I decided to have that ovary removed completely (was in peri anyway and paid for it privately because I couldnt face it continuing to happen). They removed it and sent it off to the lab- not a single sign of cancer, it was completely benign. My CA125 is back down to 35 now which is considered normal.

I understand your worry but please dont get ahead of yourself- CA125 is just an indication of inflammation of some kind, so it could be due to fibroids, cysts, even a heavy period can raise it. I've had no problems since. It was just that my left ovary was a PITA. My right ovary is fine.

I can't talk about ovarian cancer from a personal perspective but I have really bad endometriosis, flooding periods and have had health professionals worried about my symptoms. At one point, I was so unwell I lost 2 stone because I couldn't eat. That was the only time I was really scared.

Endometrial cysts and similar conditions can have horrendous symptoms that mimic cancer. The CA125 is a crucial test and if you had any kind of advanced cancer it would be really high, not just a bit out. On the positive side if there is anything to worry about, it's really early days so you will be fine. The consultant sounds really calm so take your cue from her.

Thanks all. I know rationally the consultant wasn't worried about the ca125 at all the first time, and said if it had absolutely shot up she'd order a CT scan, so the fact that she just wants to redo the ultrasound in 3 months suggests they're really confident the cysts are benign. I can't imagine they'd leave it 3 months, if not. I'm just a bit spooked that the blood test has gone up from 49 to 85, but then again I do have cysts and they can raise it. I'm just really bad at uncertainty 😬

I had an ovary and fallopian tube removed last year as i had a very large cyst which was found on an ultrasound. After it was discovered I was sent for a CA125 blood test and freaked out when the result came back at 78. My consultant was very reassuring and insisted it wasn't that high and that I shouldn't worry about it. He thought it was probably caused by some endemetriosis.

They re-ran the blood test and I don't know what the second result was, but it still must have been high because I was sent for CT scan on the 2 week pathway (just as a precaution). The scan came back clear but because the cyst was causing pressure on my kidneys, I had urgent surgery.

After the surgery the consultant confirmed I had quite alot of endemetriosis which was the cause of the raised CA125.

Thanks Frazzled, that's good to hear. I'm pretty sure I don't have endo (but who knows) and I know my cysts are pretty small, so I'm not sure why my ca125 is rising. I'm holding onto the fact that the consultant said the ca125 test was often not helpful (in fact she called it 'useless'), and that she's looked at my scan results and and thought there was no cause for concern. I keep repeating that to myself, but I am feeling a bit shaken. I had really hoped last week's appointment would be the end of it and that my blood test would have gone back to normal. What's causing it to rise? 😕And while it's good that there doesn't seem to be any urgency to re-scan, three months seems a long time to wait wondering what's causing this. And if there is something wrong, then it's got time to get worse... sorry my mind is spiraling a bit right now!

jumping on your post OP
Was referred for a scan last week for the end of the month but going private as hubby gets this through his work so hoping to get seen quicker
Had to phone my DR for a referral letter and told me my levels were raised at 42
Immediate panic so phoned the gynaecology ward at my local hospital who were horrified the DR a mentioned the C word
I just had a recent mis carriage and along with two cysts can raise these levels

The support on hear is reassuring
Thanks ladies and hope everyone is well

Hi @131104E sorry I didn't see your post before -- I've been trying to stay offline as I was working myself up through googling! It sounds like there are several very benign reasons for your raised levels.

I'm afraid I've worked myself up into a bit of a state. I can't stop thinking that my ca125 is too high, considering the small size of my cysts (even though the medics must not be too worried or they'd not be leaving me three months!!)

To add to my stress, I've started spotting this morning, just two weeks after my last period!! (which was very light in itself). I can't tell if this is mid-cycle spotting or the start of a really early period. But I've never had spotting before and I've never had a 14 day cycle before, either!

Obviously I'll phone the GP on Monday (why do these things go always happen weekend!!), but does anyone know if mid-cycle spotting or very short cycles can be caused by cysts?? My cysts are really small (2cm) and probably both hemmorhagic, if that helps. Or mayabe its just the start of perimenopaise (I'm 42).Could really do with someone talking me down so I can at least get through the weekend. Feeling really spooked now.

Hi @WorriedaboutOC

Your levels are still really low - I was told they were looking for very rapid doubling - that hasn’t happened AT ALL for you. You still have cysts, so your CA125 will still be raised and it will fluctuate. I’ve just googled the bleeding so you don’t have to and the first page of hits all say a variation of:

Ovarian cysts can lead to unexpected vaginal spotting or bleeding between periods. If you have irregular bleeding, a cyst could be the cause.

Do you remember how scary it was to be put on the 2 week urgent referral pathway? They do that because they don’t take ANY chances. Do you think the experts would then leave you for 3 months if they had ANY concerns?

Step away from Google and remember that the many consultants referred to on this thread all agree that CA125 is a crap diagnostic tool for premenopausal women for exactly this reason - it causes totally unnecessary anxiety.

Breathe - you’re in good hands.

Thanks so much @BringItBackBruno . I really appreciate you taking the time to answer. Also, I like the fact that you don't think a rise fro 48 to 85 in two weeks sounds too bad. In my head it was a massive jump 😬

The bleeding continues, and feels like a period, although light, so think I may have some hormone imbalance too (I chart my BBT it's been WEIRD this month) . I will try to speak to the gp tomorrow about the wonky cycle, and see if it could be connected to the cysts.

Good idea to see your GP re the bleeding @WorriedaboutOC - it could be peri and in my experience getting the blood tests to establish what’s going on sooner rather than later is a good thing (love my HRT 😂).

Genuinely if your consultant has described your cysts as “uninteresting” I would relax - they know exactly what they are looking for.

ps more “Googling so you don’t have to” - I’ve just been reading a study about women with CA-125 between 1000 and 5000 who all had benign conditions…….

I know it’s so hard - I was a gibbering wreck - but the people who really know about this stuff aren’t worried which should tell you all you need to know.

Love the 'Googling so you don't have to,' @BringItBackBruno 😁that's so kind of you.

In all honesty, I think I have probably read EVERYTHING on the internet about cysts and ca125...

I'm going to try to get through the day without catastrophising. Wish me luck!

How are you all ?

Having recently been through the 2 ww pathway for something / somewhere else in my body.. where thankfully the biopsy results came back ok..

I now have raised ca125 :(

Although the blood test was done when i had my period

Pretty scared

Score is over 90 but below 100

@worldwidetravel2017
When mine were raised, my GP said she'd be worried if it was 200 or higher, I hope that helps?

Thank you , super helpful & super kind

Happy, unfortunately many a woman has been diagnosed with OC with CA125 levels just a few points above normal. I’m one of them. And I think when Drs say the things your GP said it’s really not for the best. My own cancer forced, Mucinous Ovarian Cancer, is actually known for not causing much of a rise in the CA125. It’s one of the characteristics.