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.

I spoke to the specialist nurse again yesterday. She read out my full CT scan report, which showed 'no sign of anything sinister' and looked clear apart from a 'simple cyst'. But she also said there was a small cyst on my other ovary but that's quite normal.

I've had further blood tests for AFP and HCG, which I believe are other tumour markers, because the doctors are still worried about my raised levels. I'll wait and see what becomes of them.

My arm is now bruised from all the blood tests and the 'wet your pants' catheter I had for my scan.

I had a slightly raised CA 125 like you OP. Doc wasn't unduly concerned as he said usually for serious conditions it is considerably raised.
Scan showed very large follicle. Sonographer said it was borderline between cyst and follicle.
Retest on CA125 showed it had come down, and on the third test it was normal.

Piggychops that's good to hear - thank you.

PJs that sounds like more good news to me! When do you get the results of those tests?

Well I'm off to the hospital in a bit. Feeling completely nauseous but looking forward to getting some answers.

Good luck Wurly. Hoping for good news later.

PJs One of the tests on my form was AFP last week....still waiting for results. I tell myself they are all just standard tests which they do simply as a check, not because they expect to find anything!

I'll get my results when I see the consultant on Monday I hope.

I'm still worried, my CA125 was 841 which is really high, and the nurse wouldn't tell me what my CA19-9 was which makes me think it was also very high. But it feels good to know they've had a good look inside me with the CT. But I'm telling myself that if there was anything bad they would have seen it, and I probably won't know any more until they do the surgery so I'm trying to relax.

What has struck me most since being ill is just how common ovarian cysts are - so many people have come to me with their own stories, it's so common. Even my lovely Aunt messaged me to tell me she had exactly the same as me, when she was the same age as me - chocolate cysts removed through surgery, and went on to have 2 more children.

Fingers firmly crossed for you today Wurly

schilke when will you hear about your test results?

I don't know when I find out. I left the clinic in such a hurry that I forgot to ask. On the appointment letter it said I would get sent a copy of the letter that goes to my GP, so I'll have to keep on waiting! I've realised that I'm hanging around the door waiting for the post this week. Doesn't help that sometimes the post comes at 9:30am and other days it's 2pm!

They have had a good look. It must be hard waiting and trying to keep the rational side in charge, but you're doing a good job so hang on in there.

I'm home and feeling a bit bruised and battered. He didn't seem overly concerned about the CA125. - he suspects I have endometriosis and I have 3 cysts, one of which I have bled into. I am going back in 6 weeks for a rescan and to retest CA125 - if no better he is going to remove my ovary. In the mean time I am on the mini pill to regulate my hormones as he suspects an imbalance, and he did a womb biopsy which he says he is expecting to come back normal. If her removes the ovary he will do a laparoscopy (sp) at the same time and wants to fit a mirena too, but will discuss more surgical options if necessary .

LOTS of information but in general I feel that he wouldn't send me off for 6 weeks if he was worried, and he did say at least 3 times that he calls ca125 a hormone test as it's much more to do with unhappy ovaries than cancer. And when he heard I had had the ca125 test during my period he rolled his eyes and said his one will be done mid cycle which speaks volumes!

I feel completely wrung out and disappointed I still don't have an answer but less scared than I did :)

Oh Wurly I've been thinking of you all day.

That's really good news. It sounds like they really don't get too worried about a raised CA 125 if everything else looks ok. Endo + Period sounds like it can easily raise your levels.

It sounds like there are lots of options to treat you, and they won't remove your ovary unless its the best thing. Great to know that you're in good hands and being monitored.

Can I ask - how do they do a womb biopsy? Is it like a smear...?

I'm off again today. I went to work yesterday but only lasted half a day as the pain built up from sitting at my desk and being squashed into jeans! My belly is so bloated, I'm a size 12 but I look 5 months pregnant.

So I'm on the couch again in my jobbing bottoms. So glamorous.

*JOGGING bottoms!!!!

Pmsl at jobbing bottoms - I would love to see that!!!!

Sorry you're feeling so bloated - that sucks. The sooner they get your little friend out, the better!

Schilke did they tell you how long you would wait for the biopsy results? My consultant said 6 weeks which seems AGES....

Good news Wurly. Glad your mind has been put at rest. No, they didn't tell me how long for results and I forgot to ask.

The consultant I saw was wanting to give me a Mirena coil too, but I wasn't interested. My periods are not that heavy. I told her that I had no gynae problems and that I was only there because of the CA125 result!

PJs the biopsy was a bit like a smear, but with more of an ouch!

Hi can I join, I went to gp last week as missed a period, I am 41 and have been on the pill approx 20 years. I did pregnancy test and negative, gp did a prod and a poke abdo exam and said couldn't feel anything, referred for pelvic ultrasound and loads bloods, ultrasound was clear nothing suspicious, but am wsiting for bloods, the tests are fbc, fsh, lh, liver function, esr which I think is inflammation and the ca125, I am a bag of nerves at the mo thinking about the results, can anyone help me out a bit.

Hi pink koala, it sounds good to me that your ultrasound was clear - when do you get your blood results?

Hi pink. As Wurly said, the fact your ultrasound was clear is great. Mine was clear, so although my ca125 is not behaving, the fact that nothing out of the ordinary can be seen had made me feel everything is fine. Hope the results come back soon.

I think I should get my results Tues or weds next week, but am still worrying.Do you know uf the gp would ring Iif something came back they weren't happy about or would they wait til I call.

Hi Pink sorry you're going through the worry too.

I wouldn't worry about your GP asking for CA 125 test, I think it's pretty standard. you had a clear ultrasound so it sounds like positive news. Try not to worry yourself too much

Different GPs will deal with it differently, but there's no harm in calling to ask if your results are in. Sometimes they'll tell you there and then if it's clear.

Hope everyone is doing ok. I got a letter today - copy of letter sent to my GP. Tells me I need to go back for more blood tests - further tumour markers and CA125 again and that I'm going to be referred to a pelvic mass clinic for another scan.

Doesn't tell me results of last lot of bloods and says still waiting for biopsy results.

So still in the dark. Arse. My worry has returned. I'm wondering what my blood is turning up that requires a further appointment as, according to last examination, I have no pelvic mass.

Hi, just thought I would let you know all my bloods came bk ok, I rang today and the receptionist told me over the phone.
schilke, its awful the worrying and waiting, I am thinking if you and I am sure you will get sorted soon.

Hello lovely ladies,

pink that's great news, worry over

schilke try not to worry too much, they're just following up the raised CA125 like they did with me, good for them to have a good thorough check

Well I met with the surgeon today... And signed my ovary away. That feels weird I tell you. He was really reassuring. I'd had extra blood tests for AFP and HCG, which are further tumour markers, and they were normal. He said that the raised CA125 and CA 19-9 are just indicators that my ovary was misbehaving, which it clearly is because it has a cyst and may well be twisted. He said I'll be having surgery in 3 weeks to remove the cyst, and they might have to remove the ovary if it's bad, but won't remove anything else without discussing it with me.

I'm reassured, but frightened about what they might find. I'm petrified of them finding more damage and wanting to remove the whole lot... He did utter the word 'hysterectomy' at one point, but he was just talking about worst case scenarios, and he reassured me that they won't do anything without my permission. I'm scared but I feel a million times better than I did when I was waiting for the CT results.

So now I just wait for surgery. I'm in pain, with my misbehaving ovary!

But I hope I've managed to reassure some of you about your own blood tests.

Hi everyone

Schilke, they are just double checking - they have to because of the raised CA125. You know that they've checked once ans found no mass - keep remembering that.

PJs I'm so glad the other tests were normal - what a relief. I'm sorry your ovary is misbehaving - pesky things! But by the sound of it you may get away with just the cyst being removed so let's hope it all goes smoothly.

I'm fine, tring not to think about re scans and biopsy results. The mini pill the consultant insists I try for the 6 weeks is making me snappy and greasy haired, but I promised I would try it to get my stupid periods to behave, so let's see if I can stick it for 6 weeks without divorcing my husband!!!!

Worth persevering with the pill, I had very mild periods for years on it. I'd go back on it immediately if I wasn't ttc.

I'm freaking out a bit. I'm trying not to think about the fact that they still haven't ruled out The Big C and won't do until they look inside me, it's more the thought of messing with my fertility and maybe losing an ovary that I'm scared of.

Hope everyone is enjoying this sunshine while it lasts

Hey PJs, I know just how you are feeling. I got my next appointment through today - may 13th- and got that sinking feeling again.

They won't do a hysterectomy, they just won't, and you can get pregnant with just one ovary. I think you will feel massive relief once it's over, but you're going to have a long 3 weeks, there's no getting away from it sadly. I so feel for you, the bloody waiting and wondering is enough to drive you nuts isn't it.........

Wurly your appointment is for the rescan, am I right? That's good, fingers crossed you'll get some good news. Your date is the day before my surgery, so we can wait together!!

But surely they're not going to make you wait until then for your biopsy results? I would call them and ask for the results, they should be able to tell you over the phone if everything is ok. Is there a specialist nurse, or secretary for your consultant you can call? They won't mind you asking, it's perfectly reasonable.

Oh PJs I thought of you today. After a series of confusing phone calls it turns out the appointment on May 13th is for the consultant to confirm what is happening and what he wants to do about it. My scan is on the 12th (fine) and I need to go in for a repeat blood test. I was FINE until his secretary called me to make sure I had the blood test done a couple of days before the appointment because "he's concerned about your CA125 levels".

I know that. I know that's why I'm under his care. But the fact she called me at work and said the word "CA125" made me panic again. And I thought "I totally know what PJs means about suddenly freaking out!".

And apparently the biopsy results take 5 weeks????

So it appears we are waiting together again :) sorry you're waiting with me but glad you're waiting with me IYKWIM xx

Wurly don't panic (easier said than done, I know)

I too had the repeat blood test, although not to re-check the CA-125, but to look at other tumour markers AFP and HCG.

As for your CA125, I'm no expert, but if it puts your mind at rest at all - your's was 48, am I right? Mine was 841 and the consultant still said that it's more a test of an unhappy ovary.

I can't believe the biopsy will take 5 weeks, that's truly awful. I feel for you.

Hang on in there, I'm here whenever you want to rant!