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.

Schilke that sounds worrying, I hope you're ok and fingers crossed the biopsy results are clear.

I'm going for my CT scan today. I spoke to the specialist nurse yesterday who was lovely. She told me the medical expert team will meet next week to discuss my case and she will update me, but I won't know about the results of the CT until I see the Doctor myself. The wait is absolutely agonising, I really don't know how I will get through it.

I asked her to tell me which tumour markers were raised, and what the levels were. She was reluctant, saying "Don't go Googling!" (which of course I have), but told me that my CA 125 was 841, and my CA 1-99 was raised but wouldn't say what the level was.

So that's got me worrying even more. But I've read that both of those tests can be raised with Endometriosis... so with a 6cm Endometrioma, plus lots of other endo symptoms, I'm hoping it's still the most likely cause.

I'm freaking out slightly, and just feeling so low. To make matters worse, I have my period and horrendous period pains which woke me up at 4am this morning. DH brought me my hot water bottle and a cup of tea this morning which helped enormously, bless him.

PJs I hope the scan went well today. Hopefully the wait for results won't be too long. It's so hard not to google isn't it?

I've been having a lot of cramps today and bleeding more than I expected from the biopsy.

Oh PJs I know its not the MN thing but a big hug from me. Please PM me if you want to - I now the "how will I make it through the wait" feeling far too well - maybe we can help each other through the next week. From what I've googled (far too much!!) the 6cm endometrioma PLUS other endo symptoms PLUS you were on your period...there was a lot going on there during the tests. And you have a team looking into this - sounds like you're in great hands.

Schilke, sorry you're bleeding - that sucks on top of everything else. When do you get the biopsy results?

Thanks everyone, it's horrible but nice to talk to people who understand.

Well ladies, I can report that during a CT scan they inject you with a contrast dye which gives you a warm feeling then makes you feel like you've wet your pants! It's so bizarre, I'm glad the lovely technician warned me first! I also had to drink a huge sports bottle full of milky white fluid helpfully flavoured with Orange ... Bleurgh! Luckily they gave me an anti sickness drug first! Ah the joys.

Recovering on the couch now, today was emotionally and physically draining.

Thinking of you all x

Blech -sounds grim!! Well done for braving it out, and enjoy a well earned rest xxx

Mega positive vibes to everyone waiting. The not-knowing is dreadful.

PJs - do you know which bit(s) of you were scanned? I just had the dye injection. I wasn't allowed to eat or drink from the night before - but I had a pelvic/abdo MRI on the same day. Fasting might have been for that. My CT was abdo and chest. But drinking just beforehand in your case sounds as if they were looking at your GI system as well as pelvic?

Don't know if anyone's looked at the Ovacome site? Yes, it's for ov-ca but is full of temporary residents, having tests and waiting to be diagnosed. There's a help-line to a nurse, to answer questions.

The American Inspire site is, imo, a lot more informative. Less hand-holding, more posters who really know about the subject. And, of course, much more traffic from a much bigger population. There are a number of women who are currently having complex cysts investigated and I think there's an endo group.

I stayed away from Google entirely till I'd got my diagnosis. My poor daughter read up everything but didn't bother with what I turned out to have because it said 'younger women' and 'not serious'!

Ooh PJs well done for getting through that. That dye and drink sounds awful. I'm not sure I could have drunk it. I've thrown up after Gaviscon before and after a premed when I was 9! I hope the results come through quickly.

I've had to resort to painkillers. The cramping is worse than a normal period and I'm bleeding rather a lot - more than "spotting" which is what it said in the information they gave me. Does anyone know if I can use tampons? I've read conflicting info online. Some say only use pads and others say use pads for a day and then can use tampons. My period is due on Sunday so I have a feeling it's going to feel like one long period!

Schilke sorry to hear you're still bleeding. Is there a specialist nurse or number for the ward that you can call for advice to ask about tampons? Might be good to let them know about your bleeding anyway.

Hope you're managing the pain ok - Ibuprofen and a hot water applied with gentle pressure on my tummy is my magic formula. When the cramps are bad, I literally groan with relief once I get my hot water bottle, it feels so good. I also walk around with it stuffed down the front of my pants it really helps. another good reason to be off work! Not a good look

Thyme my scan was pelvic / abdo. I had to fast from the night before, and I guess the drink was to show up my stomach / digestive tract? Although not sure how much of it would get through my stomach in 40 mins..?

One bit of good news was they told me they had planned on doing a CT scan on my chest, but because it's quite strong radiation they do an X-ray first to check whether it is necessary. She said that the X ray was ok so they weren't going to CT my chest... so I assume that means my chest looked clear.

I've looked at those sites you recommended, really good, thanks for letting us know about them.

I've signed myself off for the rest of the week. Feel a bit of a flake for doing this, but I'm still in pan and worried about driving. Also found squeezing into jeans yesterday for going out in public really difficult, so I'm back in my baggy jogging pants that I bought specially to accommodate my cyst. (or my PJs, hence my username!). I've also emailed my bosses to tell them the full story - I'd previously told them I had an ovarian cyst and needed surgery, but I felt that I needed to give them the full story to explain my continued absence. My boss replied that someone else in work had previously experienced raised tumour markers that turned out to be endometriosis, so that's reassuring.

Wurly how are you feeling today?

Sorry to hear about the bleeding Schilke - I hope you got an answer re the tampons.

PJs that's REALLY good news re the chest CT :-) and nice to hear that tyour bosses have heard of similar happening before - another positive story.

Well I got home to appointment details for Wednesday - it's the gynae oncology consultant which is good because they're the specialists but still hit a bit hard :( I had a panic again last night after googling, so must try to stop! Feeling a bit better again this afternoon - it's difficult to get/keep things in perspective when you just don't know.......

it's difficult to get/keep things in perspective when you just don't know.......

It's awful. I'm taking each hour as it comes. Each hour that passes, we're all a little bit closer to getting our answers.

Here's a story of how ridiculous I am to cheer you up.

I dye my hair, because it's grey underneath. But I missed my hairdresser's appointment as it was on the day I went into A&E. I made a second appointment and it was the day I was called in for my scan. I was so upset after it that I completely forgot AGAIN!

So now I'm embarrassed to call the hairdressers! And my roots are TERRIBLE! They'll understand if I explain I've been in hospital won't they.....?!

PJs it's fine to tell them you've been in hospital........with amnesia ;-) Thanks for making me laugh!

hi all

been interesting reading your posts ... i went through a similar thing 5 years ago ... pain took me to the GP who felt a lump on my left ovary ... fast tracked through due to suspected cancer ... raised CA125 to 98, and mass on left ovary, cyst on right and fibroids. Consultant wanted to do hysterectomy but I was only 45 and pre-menopausal so resisted. Had left ovary removed then observation on right but I'm "right as rain". Don't be forced into surgery you don't need and stay positive cos you will get through. Also watch out for who is treating you .. check their status on GMC website at www.gmc-uk.org/doctors/register/LRMP.asp

PJs I hope you got your hair sorted!

Bleeding stopped Friday evening and period started today - oh joy! I don't feel that worried any more as they can't find anything wrong. I suppose the bit nagging me is if I have no cysts, fibroids, endometriosis then why is my CA125 at 115?!

Sorry to hear you're still suffering schilke although having a period means things getting back to normal I guess. I'm sure they'll get to the bottom of your raised blood test levels, what's the next step for you?

Sally nice to hear another positive story.

I'm very nervous about tomorrow - I think the Drs are meeting to discuss me and decide whether to refer me to oncology or keep me with Gynae. The specialist nurse said she'd call with any news, but won't be able to tell me if its 'complicated' - which I took to mean if it's The Big C she will have to let the Drs tell me, but if they found nothing on the CT scan she can tell me... So I'm going to spend the day waiting as a nervous wreck.

Hope those of you waiting for news have managed to have a nice weekend and forget about it just for a few moments.

Oh, and no, I still haven't got my hair sorted! I'm a grey haired wreck!!

PJs just logging on before work to say I'm thinking about you today - I know it's going to be tough waiting to hear, but you're one step closer to getting answers. I wish I could fast forward the day for you!

Schilke I'm glad you're feeling better, when do you get your results? What do they do next?

Sally thanks for sharing your story - I'm glad you had such a positive outcome

I'm ok, counting down to Wednesdays appointment and trying to stay away from google!

Good luck today PJs. I'm just waiting for blood test results and biopsy result. Was in such a hurry to leave the hospital that I never thought to ask how long it would take for results. I assume I'll get a letter saying don't come back or do come back!

schilke

The usual way endometriosis is diagnosed is through a keyhole surgery op called a laparoscopy. Tests like internal scans and blood tests (which can show a raised CA125 marker if endo is present) do not usually detect it as the endometriosis deposits are so small.

Ah ok, thanks Attila.

Thank you everyone. I'm very jumpy today, I get the shakes every time the phone rings. It's like when I waited all weekend after my job interview to hear that I'd got my dream job.... except without the dream job offer at the end of it!!

Trying to take my mind off things by batch cooking stuff for the freezer for when I get out of hospital

Well I had some good news (I think!)

After waiting until 5:30 with no call from the hospital, I took the bull by the horns and rang the specialist nurse. I think she had forgotten to ring me (aaargh!) but she was lovely. She said that although she didn't have my notes in front of her, she could tell me that the medical expert team have seen my CT scan results and don't think it's cancer.

She said that they're still concerned about my raised CA 125 and CA 19-9 results, and want to do further blood tests on me this week. But given my age, and the clear CT it's more likely to be a complication with the cyst than cancer.

So, I'm cautiously optimistic. Still don't know what's going on, but I feel a damn lot better than I did this morning!

I'm in constant pain now though, I think the cyst is pressing on my sciatic nerve, I have pain in my hip and down through my thigh. It's knackering.

But I feel happy

Hurrah PJs. How awful to wait all day for the phone to ring only to find out they've forgotten. Glad it was good news though! Do you still need surgery to remove the cyst?

My period was not a period - think the little bleeding I had yesterday was biopsy related. The first time my period's been late in years....it's usually early!

Yes, it was pretty awful although I distracted myself by going out in the end rather than sitting watching the phone all day.

I still need surgery, it's pencilled in for 4 weeks from now. I'm seeing the consultant next week for an update, so hopefully I'll get some more answers and learn more about what's ahead of me. In the meantime, I have to have more blood tests as they're still worried.

Sounds like the biopsy has messed with your system a bit Schilke? Hope you're ok.

OMG PJs that's brilliant news - I am so so happy for you. I have been thinking about you all day. Phew! Glad they're still looking into the higher level as is must be an infection or something but what a relief. Sleep well tonight :-)

Schilkeim not surprised you're cycle is out - they have messed with your insides a fair bit!

Well I had to tell my boss who was back from holiday this morning as I'll need most of Wednesday off for my appointment, and after a week of holding it together really well I burst into tears out of the blue. Thankfully we were in a private meeting room and my boss is lovely but I was still so embarrassed.

Anyway, off to celebrate PJs good news :-)

Aww thank you Wurly

Glad your boss was lovely, I don't blame you for bursting into tears. Don't feel embarrassed. I copped out with mine and didn't tell them the whole story when I first saw them (I told them I had a cyst and needed surgery, but didn't tell them about the tumour markers) because I knew that I'd burst into tears if I had to actually say it out loud. Then once I figured I was going to take the rest of the week and today off, I knewI needed to be upfront with them about the real reason, so I just emailed them. They were lovely, and I'll tell them the latest tomorrow when I finally go back to work.

You should take the whole of Wednesday off Wurly - I was in no fit state to go back to work after the appointment, treat yourself kindly.

Thinking of you all, keep your heads up ladies.

Thinking of you today Wurly good luck and take care of yourself.