Worried - ovarian cyst and raised CA125

[xWurlyCurlyx]

Hi,

I'm hoping for some reassurance! I had an ultrasound looking for fibroids, and the lovely sonographer was very chatty and said I had 3 large cysts in my left ovary, they would probably go away on their own, they would do a standard blood test and rescan in 8 weeks.

I got called into the GP this morning as the blood test results are back and the CA125 levels are elevated (should be 0-35 and mine are 48). She's referring me to a gynae and was talking about removing my ovary.... I was slightly in shock so didn't ask any questions!

Does anyone have any experience of this? From what I've read people often have a scan because of raised CA125, but I had mine first and they didn't seem to find anything worrying.

Does anyone know what happens from here?

Thanks in advance.

Wurly I'm starting to think, after 2 glasses of wine, that CA125 is a load of rubbish! Mine is 115 and there's nothing wrong with my ovary - nothing in it that shouldn't be...I'm starting to wish there was as at least that would explain the numbers! Nothing that can explain that level - no cysts.

I'm never going to the GP again as I've ended up with a load of worry! That's why I stayed away from doctors for 8 years.

It does seem odd that the doctors are both ready to jump on the cancer assumption, and dismiss it as something that 'just shows an unhappy Ovary' at the same time.

I guess it just flags up that something needs looking at more closely.

My Ovary was unhappy, but after a week of doing not much except lie on the couch, it's much happier . If it's coming out, I might as well give it a happy last few weeks

I'm never going to the GP again as I've ended up with a load of worry! That's why I stayed away from doctors for 8 years.

Noooo naughty schilke just change your GP if you're not happy with them. It's good that the jumped on your test result, even better that they've found nothing. You've had a mini-MOT!

Hah NC fail, now I've outed myself... I NCed for this thread oh well.

Don't worry PJs - i still have no idea who you are !!

Schilke I agree re not going to the doctors ever again. I had a crap nights sleep again last night....the cyst isn't even affecting me - they only scanned me looking for fibroids because of one monster heavy period! And all the times I have casually had a blood test and not given it a second thought or even known what they were testing for....I feel sick at the thought now!!!

Truly, the only time Ca125 really comes into its own as a useful marker is during and after treatment, when going up or down shows whether it's working or later in follow-up scans as an early warning of recurrence.

It isn't even ovary specific. Any inflammation in the pelvic/abdo area can cause a raised level. Wurly - your rise is minuscule. 35 is a purely arbitrary level. 48 might be normal for you.

And it's particularly unreliable for pre-menopausal women. Or they'd roll it out for the general population, like cervical smears.

And the amount of worry it causes.... I think they do it because they haven't got anything else and there's always the chance that it could pick up the odd case which they could then get early. Gyne-oncs must feel so helpless when so many are diagnosed late. Tho' - repeat after me! - ov-ca is rare - 2 in 100 overall, and even rarer in young women.

This is a horrible, horrible time - to everyone.

Thank you Thyme that's reassuring (although I'm still freaked out, my levels were over 800), but I understand it could well be caused by the cyst and possible torsion.

I'm laid up on the couch again today, and I'm sick of it. I've had niggling pain ever since the initial flare up a month ago, but today I'm getting the same sharp pains that made me go to A&E in the first place. I'm really, really worried it's about to kick off again...

And I'm booked to do a really physical activity tomorrow which I really want to do. I'm going to go and stand at the back and be rubbish and not lift anything... hope everyone doesn't assume I'm pregnant!

Oh and I've been having really weird dreams ever since my diagnosis... last night I dreamt about giant hedgehogs!!!!

I think my poor mind is just overwhelmed and goes into overdrive when I'm asleep!

How are we all doing?

PJs are you still in pain? I've been getting twinges again which is really disappointing as I was hoping it had gone away on its own - wishful, thinking!! How did you get on at the activity on Sunday?

How are you doing Schilke?

I'm not great - feeling low and tearful (and nauseous which I think must be the pill....). I just want to hibernate for a couple of weeks until my next appointment.

Oh Wurly hang on in there. Have you got anything to look forward to over the next couple of weeks which will take your mind off things?

PJs Hope your physical activity went ok...it sounded very mysterious!

I've been feeling so tired. I'm taking iron and have been for 3 months, but this heavy tired feeling will not shift. My period has vanished and I have no idea where I am in my cycle - I'm not used to that so am most put out. I've also had a niggly pain in my back - on the left where that nobbly bit is!! Sometimes I have a pain in the front too, level with the same area.

I feel like I could moan all day - mainly about the tiredness. It's not helped by the fact I take an antihistamine and even the non-drowsy ones knock me out.

None of this is related to my CA125 though. I am still waiting to hear for an appointment at the clinic. Tbh, I think I have stopped worrying about it and if I never hear anything from them again, I won't question it.

Hello lovey ladies, I was Just thinking about you!

Well, I have had some good news - my surgery has been brought forward so I'm actually going in next week. I had a bit of a cry when the letter came, because it all suddenly felt so real!

I'm still in pain. The physical thing on Sunday went ok, although I was knackered and in pain. It just shows how much good laying out on the sofa has been doing me, because as soon as I squash my swollen belly into jeans and try and sit upright for any length of time, or try and do anything physical, the pain ramps up. I feel like there's a big balloon inside me that would explode if I bent over or exerted myself... aargh! One of my friends was trying to be helpful and said "I know what you need - maternity jeans!". She wasn't being nasty, but I just felt even more shit that the only time I may ever need maternity jeans is to accommodate my ovarian cyst rather than a pregnant belly....

Looking forward to getting it over with, having all the answers and knowing where I stand... but I'm petrified of the surgery, or the anaesthetic (never had one before), and of the outcome.

Sorry you're feeling pain Wurly, I've found resting really helps, so do try and get as much rest as you can.

schilke good that you've managed to put the CA125 out of your mind - if they haven't called you in you can assume that's because they're not too worried either. I understand about the feeling tired - I think when your body is dealing with something it just puts all its energy into that, and tires your brain out!

So I'm back on the couch this afternoon (took another afternoon off work), I'm going to be like the side of a house by the time this recovery is over! I actually measured my swollen belly today, in the hope that I'll see a few inches come off it after my surgery!

Oh PJs the maternity jeans comment must have hurt :( but I'm pleased that the surgery has been brought forward - you will feel so much better once it's over and can get off the couch!! I know what you mean about the letter making you cry - getting appointment cards and scan dates through this week has sent me wobbly again too...

And Schilke I'm sorry you're feeling so tired - I know that feeling well from when I was anaemic and the anti histamine definitely won't be helping. Did th clinic say when you would hear from them next? Good that you're not worrying though - they obviously aren't which is a very good sign!

Hi all

Could I join this thread as you ladies seem knowledgable about women's issues!! I had a translational ultrasound yesterday's for spotting/irregular bleeding. Apparently my ovaries are multi follicular with prominent stromal changes.... Any idea what this means. Sonograoher said this was a 'nuisance' but not sinister...... But my mind is going crazy with worry until I see the consultant in two weeks! Any advice?

Hi girlsville,

No particular knowledge of that but my advice would be don't panic. All of us have been referred urgently to consultants and there are a mix of odd/annoying symptoms among us but the consultants seem very relaxed about them and the accompanying blood results!!

Welcome to the anxiety of waiting though... It sucks! (But we will keep you company) x

Thank you. I am feeling so anxious and have completely lost my appetite! Trying to hang on to the fact he said 'it's not nasty or sinister' but then keep thinking about him saying 'you are in good hands with (consultant)'. Ahhh

Girlsville

Am glad you've been checked out further because spotting should always be reported to the doctors. (The cause can be sometimes due to low progesterone levels).

It could well be that your ovaries are polycystic and polycystic ovaries can appear larger than their normal size (a "normal" size ovary is about the size of a walnut). PCO is a quite common condition; about 1 in every 5 women has PCO. My ovaries were described as very similar to what yours have been described as (certainly the multi follicular part of the sonographers description). BTW did the sonographer see a ring of pearls appearance to the ovaries?.

I hope you get more answers in two weeks and in the meantime try not to unduly worry yourself about this.

Hi Girlsville welcome to the thread. I'm afraid I'm no expert on this stuff either though, I've just done a heck of a lot of googling since my diagnosis!

I found it helped to try the search function here on MN for some keywords, and you're bound to find a few threads (new or old) with people who've gone through the same.

And stick around here for mutual support too of course!!

I have 1 day left in work before my op... waaaa! I'm actually strangely excited about having all the time off... I'm sure it won't be much of a holiday though!!

Pain was crap again today, I feel like my ovary is burning, my abdomen feels hot over my ovary... I think the bugger is stuck to something it shouldn't be. I'm looking forward to having all the answers next week

I've just got my appt through to see the consultant at an Endometriosis clinic - not sure that I have endo but the guy who did my laparoscopy is an endo specialist and he wanted me to see him at his main clinic. He is going to do an MRI (not at this first appt) but I'm guessing fairly soon. I go away 12 days after this appt so I am going to try to get the MRI when I get back so I don't have the worry of the results for the 2 weeks I am away!

My story (it is on this thread somewhere) is that I had a 11cm ovarian cyst 9 years ago when pregnant with my son. It was very painful but as I was in early pregnancy they just drained it trans-abdominally. A year later a scan showed the sac had gone so all good.

Then last year I had a UTI and they decided to give me an ultrasound. They found what they thought was 2 large cysts (8x4 and 9x7). A more thorough scan by a very senior sonographer a few weeks later showed it was in fact one very large complex cyst with 2 compartments at least. I was given a CA125 which was 19 and scheduled for a diagnostic laparoscopy (he said he would try to get the cyst but he thought the fact that it was stuck behind my womb would make it difficult). The laparoscopy showed a large amount of adhesions behind my womb (oblierating the pouch of douglas) with the cyst and my left ovary stuck within that. My right ovary was stuck to the womb.

He has therefore recommended an MRI to get a better look at the cyst and then if necessary surgery to seperate adhesions and remove the cyst. Apparently it would involve a colorectal surgeon, gynae surgeon and a urologist as the appendix is involved and the cyst is near the ureta.

Phew! Anyway I am just trying to put it out of my mind at the moment. I hope everyone else gets the all clear from worrying stuff soon!

PJs when is the op? I will obviously be thinking of you x

Nikki I don't blame you for wanting the MRI result back before you go away - the waiting really is the worst bit isn't it, you can drive yourself nuts.

Girlsville I have gone over and over every word that the consultant said and analysed it over and over. I have to remind myself they are you just words! Hang in there x

Nikki that sounds complex, worrying and painful. I hope it all goes well for you. If your MRI appointment does come through before your holiday, you might be lucky and have the scan results and therefore more answers before going away, which could alleviate some of the worry - but I understand not wanting to face it until after hols. Waiting for my CT scan result was pure mental torture.

Well my surgery is in 2 days. I'm nervous but looking forward to getting the next stage on the road. Plus, the pain is increasing, I can't really do much before the pains build up and I end up back on the couch again.

Today, I got my period and the period pains have just kicked in, merging with the cyst pain, I'm doubled over in agony So while I had loads of plans to clean the house, go grocery shopping and batch cook more stuff for the freezer - I am now back on the sofa in my PJs with my hot water bottle stuck to my belly.

And I just burst into tears with DP. I can't cope with this any more. I can't wait for surgery - it will bring a new kind of pain, but at least it will get better rather than worse

Sorry for the doom and gloom! Hope everyone is having a lovely Bank Holiday Weekend!

Oh PJs you are so nearly there. The op will be here before you know it and then any pain will be healing pain which mentally will be so much more bearable.

Good luck this week PJs with the next step to feeling great again. I'll be thinking of you.

Just watching the news and they're talking about watching the changes in ca125 levels rather than having the over 35 is abnormal idea. That's taken my worry down even further.

Hope the op goes well pjs.

Good luck tomorrow PJs x

Schilke I woke up to the same news and the same thoughts. And they are also only looking at post menopausal women in that study for a reason!

It done, I'm home, it's not cancer!

They did a laparoscopy in the end, it was fine. I'll update properly tomorrow, but just wanted to tell all of those of you worrying about your CA125 - the oncologist said that mine was very high (841) , but that it is very unusual to see OC in pre menopausal women and that it was far more likely to be endo.

I have severe endo, adhesions everywhere, but I retained my ovary!!!

Relieved!