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?

Hi. The doctor is right - CA125 is a marker for quite a few things, including Endometriosis. Look up Adenomyosis and Polycystic Ovaries too.
In order the get 'the ball rolling', the 2 week pathway is best. Investigations happen quicker and so much is ruled out sooner.
Try to relax OP. Your doctor has done great by you and things are much better regarding getting a diagnosis than even 5 years ago. I have had issues for over 30 years. You are in the best possible position right now.
HTH and best wishes.

Had exactly the same situation couple years back.. & know of others who have too. honestly pls don't worry. It is highly unlikely to be cancer.. no one can say for sure until you have the tests but those markers raise for so many other more likely reasons - esp given your other diagnosis/ symptoms. I'd bet £100 now you have endo/ adeno
Good luck but pls put it to the back of your mind., not least cos worrying won't change the outcome anyway.. I ended up making myself so much worse through the stress of it.

Thank you, Plonkdropdown, that does help, and is a good way of looking at it. I'm pretty sure I don't have endometriosis, but the gp said 20% of women who have it are synptomless, so I suppose it might be...

I also read somewhere that some doctors advise against having g the ca125 test while you're menstruating, as it can cause levels to be high, so I'm holding onto that as i was on my period when my blood was taken.

Any more positive stories, to help get me through the weekend? Keep them coming please.

Thaks so much hursty, that's exactly what I need to hear right now -- that it happens to lots of women and is often fine. And youre so right that worrying won't change anything! I know that, and yet it's soooo hard to stop... it's almost as if I think worrying is somehow preventative of the worst outcome, which is nonsense, of course, but the human brain is a funny thing...

Bless you . I really hope everything will be okay for you . I am in a very similar position : scan results show two cysts , one on each side except one is a mass.

I received the call from the Dr this week, had cancer marker bloods today and am seeing the consultant on Tuesday.

I hope that everything works out for you. Hugs x

Sorry you're in the same boat, Oneglass. I hope everything is OK for you too. Let us know how it goes for you on Tuesday.

Is there a difference, do you know, between a cyst and a mass? I think my us report definitely referred to cysts, but they just seemed a bit unclear what type of them was. I wonder if the terms are interchangeable or not.

I sudddenly felt a bulge/lump which made me go to GP. Referred to Gynae on 2 week wait & meantime bloods taken showed raised CA125.
MRI showed I had large cyst (14 × 9cm), a fibroid, stage 4 endometriosis, and adenomyosis.
Didn't have a clue!
I've been on Decapeptyl injections which made everything shrink or disappear. Originally was recommended a hysterectomy but the decapeptyl worked so well there is no longer any need.

Try not to worry. Easier said than done though.
Good luck 💐

@WorriedaboutOC Hello, so sorry you are going through this. I know it's different but I was referred last week to the breast clinic under the 2WW. I totally know what you mean, I am finding being around the children makes me feel so worried and upset. Just here if you need a handhold or someone to chat to, despite us being in different boats so to speak!

Thanks Coffeebeans, it's good to hear from someone who had endo without knowing it, and I'm glad to hear how it all worked out for you.

Herby, I hope your appointment comes around soon and that it's good news for you. Sympathy and handholds from me I just feel like a wobbly mess around my kids. It's partly because I so desperately want to be there for them, and for them not to have to cope with bad news, but also a little bit because it feels like a secret I have to keep from them, does that make sense? I mean obviously I wouldn't dream of telling them anything at this stage they're too young and hopefully there will be nothing to tell -- but it feels like they're blissfully ignorant and I'm a ticking time bomb about to bring unhappiness to their lives. Reading that back, it sounds crazy, but perhaps you know what I mean...

Didn't mean to strike through that text... how did I manage that? 🤔

Thank you for your kind words. I hope all goes well for you too.
If your report says cysts - they are usually nothing to worry about as your Dr says.

I have a cyst too on one side which is identified as normal. A mass from what I can make out may be a tumour- either benign or malignant. Mine is a ‘ complex mass ‘ as well which is why they are doing things so fast I think.

I feel very shaky and have to try my best to keep it together. Keep posting and do PM me if you need to talk more x

I had 3 cysts on one ovary and 2 on the other, all the size of an egg. CA 125 was normal but I had painful symptoms and a past history of cancer so was referred for surgery. I had all the cysts and both ovaries removed by keyhole surgery and never looked back. No cancer, all benign.

I really recommend the keyhole surgery.

I sympathise with the shaky feeling, Oneglass. Not too long to wait until Tuesday, though, and then hopefully you'll get some answers. And if I've learned anything from all the ill-advised and constant googling I've been doing in the past 24 hours, it's that our bodies can produce a huge variety of weird and wonderful growths, the vast majority of which are benign. So although 'complex mass' sounds scary, it probably just means they don't know what it is, and need to investigate. Sorry, I hope that doesn't sound patronising - I know when people say things like that to me, it's sometimes not helpful.

Thanks, 2bazookas, I'm glad you had such a good outcome. My GP said if it had been my scan results alone, they wouldn't have referred me, just rescanned in 10 weeks to see if the cysts had gone or grown. It' just the raised ca125 that's worrying. Really hope it's nothing.

Hi op. I have a long and similar story albeit 10+ years ago.

Raised C125, it was 48 iirc and ovarian cysts. Suffering excruciating pain

Apparently some people do have slightly higher markers but there is no cancer. That was the case for me. My gp said she had seen them in the 100's for those with cancer.

Had a scan, showed cysts on my ovaries and endometriosis. The radiographer said no action would likely to be taken if cysts smaller than 5cm. One of mine was 5cm, so I had an ovary removed.

However this was in my mid 40s, 10 years ago. 5 years ago I had a full hysterectomy mainly due to endometrial hyperplasia. However I also still had endometriosis, adenomyosis and fibriods, quite the full house.

However I never had any cancerous cells and am now very healthy.

I think you will be absolutely fine.

@WorriedaboutOC gosh you put it better than I could, that is exactly it. I keep nearly bursting into tears over the kids and feeling hugely guilty that I didn't get a lump in my armpit checked much, much sooner, as I thought it was nothing then when I went to the GP she found another lump. My appointment has come through but is over 3 weeks from GP appt and I had to wait 10 days for that, so I am considering going privately. We really can't afford it but I am going a bit crazy. Apparently there is a private clinic at the NHS hospital and I could be seen 8 days sooner.

It really sounds like your GP is just being extra thorough and super careful, and I very much hope you will be able to relax soon.

Thinking of you. Feel free to PM me if you need someone to talk to Xxx

Thank you, Greatdomestic, I hope so.

I've read some really conflicting things about raised ca levels - some saying anything over 35 is a worry, and it doesn't matter if it's 50 or 500, and others saying it's really only numbers in the hundreds that ring alarm bells. I don't know what to think 🤷‍♀️ I know I should definitely stopgoogling, though. But I cant

Yes,
I had similar last summer

I cant really remember that much as I was very very unwell, (pregnant / extreme beyond extreme HG which was uncontrollable and made my stomach and duodenum and small instestine collapse on itself / pregnancy termination due to the above) and in an amongst they discovered some huge cysts / tumours on my ovaries (11cm, so pretty big, and another tennis ball size one)
The definitley started following it up as cancer which it was not (But it was terrifying)
after 3 hospital admissions due to the above i experienced ovarian torsion (should be called torture) so I was admitted to hospital for a 4th time, and then they moved me to urgent surgary.
10 days later i had a date and 20 days later i had more surgary (open cut from hip to hip) to remove.

it was an awful terrifying time and the big C was mentioned which nearly broke me, but all was well, they did their surgary and I only lost 1 ovary; they saved the other.

I remember how scarey it was but it was all ok really and Im sure the amazing NHS will fix you too.

Wow, Changedmynam, what a terrifying experience! I'm so sorry you went through that.

herby, please don't feel guilty -- you did go to the GP and you are now getting the right investigations. I'm sure you know that most lumps referred urgently to the breast clinic are benign (I know that doesn't stop the worry though!). Maybe go to the private clinic if you can? Just so you don't have to worry for a further 8 days.

I've just woken up, wondered why I felt weird and stressed, and then remembered 😕

I'm going to try not to waste the day googling -- it doesn't help. Every time I find a reassuring statistic or story, I find something scary to balance it out. It's a compulsion to keep searching! And I have to remind myself that I'm not medically trained and can't interpret medical journals properly.

I am going to check back on here regularly though -- is really helping to hear that some combination of ovarian cysts and dodgy ca125 levels are pretty common and that lots of you have been through similar and come out the other side.

So I've done fairly well all day with not googling, and spent time outdoors in the sunshine, but it's really hard not to dwell on it 😢

I can't help thinking that cysts on both ovaries, plus raised ca125 levels must mean theres something wrong somewhere. Anyone around to help me get a grip?

I’m in a similar position. Had slightly raised CA125, so was sent for a scan as my mum had ovarian cancer and aunty had cancer in general pelvic area (ie. Everywhere).

Found two endometrioma on one ovary and a normal cyst on the other. The radiographer who was doing my scan was able to tell me then and there it was nothing sinister because she knew my family history.

Raised CA125 could be due to loads of things, it’s not automatically cancer! It can be where you are in your cycle, cysts, endometriosis, PCOS. I personally wasn’t worried about it 😊

Thanks for sharing that Christmascracker0, that's really reassuring, especially since you had cysts on both ovaries at the same time like I do (I'd managed to convinced myself that's a bad sign). Sorry to hear about your mum and aunty.

Can I ask if you had any other follow up on the cause of your raised ca125? And was your scan an ultrasound or an MRI or CT? My GP said if my blood test hadn't been raised, she wouldn't have referred me on the 2 week pathway and they just would have done a second ultrasound in 10 weeks, so it's seems like it's mostly the ca125 that's triggered the urgent referral.

My CA125 is rarely below 200. It has been like that for a decade. I've got adenomyosis, large fibroids/bulky uterus.

I have a CA125 blood test three times a year.

I remember the first time I was referred and my consultant (still see the same one) was absolutely furious that the GP had even mentioned the C word.

It can be raised for any sort of inflammation. For instance, I had a heart attack last year and had every blood test known to man including CA125 which was above 250. It dropped back to 80 odd in February, next test due in June.

I also had a raised CA125 - worried me so much - think it was about 60. Turns out I had a large normal cyst - did have to have it out as it was so large (by keyhole). I don't think I will agree to another CA125 if I find myself in this boat again - all that worry and the level didn't even tell the consultant anything. Best wishes and try not to worry unless you actually have something to worry about! This is what I will tell myself in any similar situation I find myself in in the future. xx

Just to add, I am now perimenopausal, last period in January which is probably the reason for the big drop to 80. Nothing going on but my gynaecologist still wants a CA125 in June.

galadriel and mrsrobin, you have no idea how helpful your posts are! Thank you both. I'm going to try not to read too much into the ca125, it seems really variable.

galadriel, I hope you're* *doing well after your heart attack. Your 'normal' levels of 200, has really put things in perspective for me, and made me realise that, because I've never had thus yest before, I've really no idea what my own 'normal' baseline is, let alone what other benign factors could raise it.

mrsrobin, I am going to try my hardest to take your advice about not worrying until theres something concrete to worry about
I'm going to put on my PJs and watch Eurovision (which will definitely be a distraction 😂)