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.

Great news, PJ! Now enjoy your convalescence. Hope you are being well looked after.

Fantastic!!! I'm so pleased and what a relief. And you still have the ovary - great result. Now have a big rest!!!

Hurrah! Just logged on to see if there was an update from you. Enjoy putting your feet up!

Hello, thanks everyone.

I'm fine. So relieved. I have severe endo all over the place, with loads of adhesions between bowel, uterus, both ovaries etc (I saw pics, fascinating!). They said the endo was too extensive to burn off, but I'm not sure why they didn't snip a few of the adhesions.

They said left ovary was partly obscured but the bit they could see looked fine, and the right was fine, and they did a dye test on my tubes and both were clear.

I'm meeting consultant again in a few weeks to discuss options for further surgery, but they said the best treatment is contraceptive injection, which I obviously don't want as I'm TTC. Looks like I'll be getting on the IVF train as soon as I'm recovered.

So ladies, I had the highest CA125 of all of you on this thread, as well as high CA19-9 and they said they were confident that the cyst was not cancerous. They didn't even mention biopsy. Because they were happy it wasn't cancer, they drained it rather than remove it, which meant I got away with keyhole surgery.

So it was fine. Lots of rest for me with my hot water bottle and peppermint tea to ease the agonising pain from the trapped gas that they pumped into me!

Thinking of you all xx

So good to hear! You can look to the future now with ttc. Rest, tea and tv. My period has arrived today which I am pleased about - I hated not knowing where I was in my cycle.

I have put on 7lbs though in the last month which is most odd for me...I have been 8st 10 for years (with a little fluctuating), but weighed myself a few days ago and am 9st 3. I try to only weigh myself once a month as I get a bit obsessed. I thought I had put on a few lbs as feel a bit larger in the tummy area, but nothing has changed in my eating habits. Plus have period headache from hell so will have to venture out for migraleve.

I am so so pleased to hear that PJs - what a great result. How are you feeling today?

Schilke that's odd about the weight gain - hormones fluctuating?

I had the repeat CA125 on Friday and it was awful. They couldn't get blood out of me and I ended up with 8 holes in me - my arms are black and blue :(. But the worst part was on about the 6th attempt she said "I'm so sorry - look away" so I turned my head towards her desk and on the screen was "WURLYCURLY: SUSPECTED GYNAE CANCER". So that was nice!

Scan on Tuesday, oncologist on Wednesday so not long to wait.....

Sorry to gate crash this thread but can I ask of anyone of you had these symptoms when you had your cyst? I have intermittant pain in my right lower abdomen. I seem to get it everyday, some days it's quite painful and other days it's not too bad but niggly. It can last for half a hour up to 4 hours and it comes in waves. I only seem to get it once a day and once it's gone I am pain free. This has happened for about 4 weeks now, at first I thought it was just my cycle but it hasn't gone away. I am really worried but can't get a doctors appointment until Thursday

schilke odd about the weight gain, but good to hear your period has arrived, good to get back on track. I too have put on weight, I put it down to the bloating. Dread to think what this week of sofa, tea and cake has done to me!

Oh wurly the blood test sounds awful. How horrible for you. Did I tell you when I had one of my early appointments I was left with a student doctor who took my blood. He first tried to take it from my hand, and I told him I'd never had it taken from there before. After several stabs he failed to get any, and then continued to stab into my arm to finish the job. I nearly passed out. I'd give complained, but he was so adorable and totally gorgeous so I didn't want to get him into trouble.

As for seeing 'The Big C Word' on the screen - I totally sympathise. Throughout my appointments, the doctors were careful to avoid saying Cancer, they kept referring to 'anything sinister' instead e.g. "We're just going to be careful in case it's anything sinister". When I checked myself out of the hospital, I noticed that the surgeon who operated on me was the Oncologist. It would gave freaked me out if I'd seen it before my surgery.

I'm recovering well. I'm sore, achey and massively bloated. I look 6 months pregnant. But I'm fine, getting a bit bored and feeling like I'm just piling on the weight. Can't wait to get moving again.

tortoises yes, the pain you describe is similar to what I had. Niggly pain that came and went. it got worse if I was active, or if I'd squashed my tummy in jeans or sitting at a desk for too long. My advice is don't let your doctor fob you off, tell them you want a scan. I had pain on and off for 2 years. I was certain I had endometriosis. By the time I ended up in A&E my cyst was large, the endo severe and lots of damage already done. Who knows how it might have been if I'd been diagnosed earlier. I'm not saying you definitely have a cyst, but a simple scan will put your mind at rest and get the ball rolling if you need it.

Thinking of you all

Wurly - oh I do sympathise - seeing the word in print is an awful downer. You just have to keep telling yourself that they have to put it down to justify seeing you quickly. And if the worst comes to the worst, it's hugely better for outcomes to have a gynae-onc operating on you than just a gynae. And even in the very likely scenario that there's nothing serious going on, a gynae onc will be more inclined to leave your ovary intact, because he will know what he's doing. Or she. Whereas a Gyne might not be confident enough to do that.

You're having the gold-star treatment, right from the beginning with your GP, when others could be waiting months for a routine Gyne hospital visit. From what you've told us, they're playing v safe, even if it does make it more scary for you.

Massive positive vibes for your appointments.

Weight gain - I had a huge abdo and scrawny arms and legs. Lost half a stone in a week after my op. Fluid weighs heavy. Scales are unreliable. Does your ring or watch strap feel loose? That's a better guide.

Oh Wurly so awful to see that written down. Good luck with the scan tomorrow and oncologist on Wednesday. Hope your pin cushion of an arm has recovered. Do you normally have problems releasing your blood at blood tests? I'm always quite alarmed at how readily my body gives away my blood!

I have lost a bit of weight...thanks d&v bug . I'm wondering how long I should wait. It's 5 weeks since I had my last blood test and the biopsy. I got a letter 3 weeks after the appointment saying I would be referred to a clinic and for further blood tests. Considering that letter was written 3 days after my appointment, but took a further 2.5 weeks to arrive, perhaps I just need to wait longer. I wouldn't know who to ring as my appointment was not at the main hospital, but the letter came from it. I'm getting tired of my mother ringing me every day asking if I've heard and that I should ring up!!

Hi everyone - only got 2 minutes but had to let you know, I called for my repeat CA125 results and it's gone down to 20!!!! That's got to be good news right???? The receptionist just said it was normal and I started to sob, so she found the actual number for me. Now I'm worrying it was a mistake but I made her check 3 times.......

That's fab news Wurly. If she checked 3 times I'm sure it was right Fingers crossed the next couple of days go just as well.

Oh wurly that's fantastic news. Really pleased for you. Is your appointment with the consultant tomorrow? Good luck with that, you'll get lots more answers then. 20 is well within the normal range, and dropping levels has got to be a good sign.

schilke you should definitely call and ask for your results. The worst that can happen us they say they don't have them - but the best that can happen us they give you an answer. I'd say it's very likely they have your results by now.

One big lesson I've learned from my experience is that you have to take charge of your own case, because no one else is going to do it for you. You can fall by the wayside if you don't push yourself forward. I've done this - I first started getting symptoms 2 years ago, and I was a wallflower, waiting for my GP to fall upon a diagnosis (she never did, even when I told her I thought it was Endo). I then went through gastro investigations, and dropped through the net, never got any follow up results from my consultation and was too shy to push it. I should have gone back to GP and told them I wanted a referral to a gynae specialist. I didn't, and ended up in A&E which finally got me a scan and set the ball rolling.

My reticence has cost me 2 years of trying to conceive, during which time my Endo has become severe and nearly cost me my ovary. Don't be like me schilke , just give them a call and put yourself out of your misery. Don't worry that you don't have the correct number, just ring the number you've got and tell them what you're after, they should be able to figure out who to speak to. Good luck

Sorry that was a massive rant ! I'm just so annoyed at myself for being such a wallflower with the doctors, and at the end of the day it's my health that has suffered.

The appointment / results letters are notoriously crap. I once received an appointment letter to see the consultant on the actual day of the appointment, to find it was posted the day before needless to say, I couldn't make it, and I was furious!

Hope you get the answers you deserve

PJs I completely agree with you. My consultants letter finally arrived with my GP on Saturday (5 weeks after the appointment!) - requesting they organise a scan and repeat CA125 so results are ready by Wednesday - 4 days later!! Luckily I had called the ultrasound department and the GPs and got them both to chase the consultants secretary so they both agreed to book me in without seeing the letter. Otherwise I would be at the consultant tomorrow with NO new results, and would have to rebook..... Rant over but yes, you must PUSH and CHASE.

So had the scan today - cyst is still there, very slightly larger but not hugely so and "doesn't look sinister" so will have to see what the consultant decides tomorrow, but feeling much better .

wurly that's good news, did they say it looked like an endometrioma (chocolate cyst)? My sonographer said mine looked like a textbook one, and it was.

They also used the words "doesn't look like anything sinister" with me. Must be standard doctors speak for avoiding the word Cancer. But they wouldn't say it if they really didn't believe it.

PUSH and CHASE is to be my new mantra when dealing with doctors!

Throughout all if this, I have had zero contact with my GP, and to complicate matters I've switched GPs in the middle of it. But the real weak link in the chain seems to be the admin, the letters are just so unreliable. In this day and age, when everyone has email why the hell don't they email people?! I'm going to have to chase them again, as when I was in hospital they told me they had made a follow up appointment for me with the consultant. One week on, and I still haven't received any letter. Knowing my luck the appointment may have already been!

I ventured out for lunch today for the first time since my lap. It was nice, but weird and tiring - I fell instantly asleep for an hour and a half when I got home! Going to the beach tomorrow where I plan to sit like an old lady with a rug over my knees and snooze while DP plays with the dogs!

Good luck tomorrow Wurly, keep us posted, I'll be thinking if you.

Hope today goes well Wurly. You are both so right. I don't like to make a fuss! I had psyched myself up to phone today and a letter arrived. It's a letter dated a week ago from the consultant I saw referring me to another consultant. So I'll have to wait a little longer for the appointment date.

Anyway it said biopsy was normal. My second ca125 was 82. The first one was 115, but I was on the second day of my period.

So all a fuss about nothing I'm sure. Meanwhile dd2 is now off school with the same d&v bug that I had last weekend.

Hi everyone

Well, I have a clean bill of health :) Consultant greeted me by saying "it's really good news" - CA125 and womb biopsy both normal, and the 1 remaining cyst he is convinced will sort itself out as the others have, and it's definitely nothing to worry about, so he doesn't want to operate. He's going to request a rescan in 3 months just as a final follow up but said he doesn't expect to see me again.

I got home and just felt very very tired and slept for 12 hours last night!!

Schilke great news that the biopsy was clear and CA had dropped - hope the appointment comes through soon.

PJs hope you had fun at the beach :)

Oh wurly that's fantastic news. All the worry is over! This bloody CA test hasn't half caused us all a lot of worry hasn't it, but I suppose it does its job by flagging up cases and I'm sure it's saved lives in many cases.

schilke also excellent news. I think a dropping CA level is a really good thing, and a clear biopsy, fantastic. Your poor DD I hope she's feeling ok.

Beach was lovely thank you, tiring but good. I'm now at the stage where my wounds are healed enough to try to move about more, but then I keep doing too much and pulling and hurting them.

I took my own advice and called the hospital earlier to chase up my appointment - lo and behold, I have an appointment to see the consultant, but just hadn't been informed about it. It's in a couple of weeks, so now I have a lot of research to do because they are going t o ask me to decide whether I want further surgery on the endometriosis, or whether I want to leave it to TTC. Confusing times.

I chatted to my DP about everything, and it turns out he'd been really worried that I might have cancer, but didn't say anything. Strange because I managed to put it out of my head after the CT scan came back clear, but poor DP carried on fretting. It's a horrible thing to go through.

Happy for you both, hope you can relax now

Way hay Wurly what fantastic news. It's looking great for all of us. I bet your body was yearning for a good worry free sleep.

PJs make sure you don't do too much. Sit down and have another cup of tea I hope things become clearer for you over the next few weeks and you decide on a plan of action. I also hope your dp can relax now.

Dd2 is on the mend, but still not eating. She spent most of yesterday with a high temp in my bed. Today she's moved to the sofa!

Oh my god,my GP has written to me today and said that SHE would like me to have a repeat CA125 in 6 weeks, even though the consultant has signed me off!!! I dont want to have it done....can i refuse??? Honestly its gone down, why would i have it repeated??? Urgh......

Sounds like Belt and braces Wurly, she's obviously just being super cautious. I'd have it done, best case, it's gone down and you confirm that all is good. Worst case, it hasn't gone down, so they'll be able to look into it further and catch things early (and I don't mean the Big C, but endo or one of the many other things that can raise the levels)

Remember that the GP is a general practitioner, she's nit an expert. Your consultant is the expert. But there's no harm in double checking all is ok.

Hope you're all doing well. I got a phone call yesterday to go for a scan on Friday with a different consultant. I know she is higher in rank than the last one I saw so I'm hoping this will be the end of it. There was nothing unusual in the last scan so I'm thinking this will be the all clear scan, you've just got higher than normal levels of CA125, but that's just you.

I actually feel excited (weird?) because I think it will all be over by tomorrow evening, although still stuck with the original problem that I went to the GP about - fatigue and breathlessness!

Hi all, thought I would update. I went to the doctors today and she is sending me for a scan. Funilly enough, I haven't had the pains for a few days now, did anyone else find they would go for a bit? I am in the first half of my cycle so it might be that but fingers crossed the scan will be clear. I have also had mild spotting on occasion in between my periods (thought it was down to the coil) so she wants me to go for a smear too so now I am stressing about that! I still think it's the coil though as I can feel it when I get the spotting so I think it moves sometimes and irritates my cervix.

It's over! Lovely consultant scanned me and said she was perfectly happy. She can't see anything wrong at all. She wondered why my GP had requested that blood test when I had no problems with my periods/pain in that region. However, she wanted me to repeat the CA125 blood test in August.

Have a lovely weekend everyone!