Ovarian cyst and raised ca125

[Toarrie]

Just looking for support/advice/a hand hold.

Ive been noticeably bloated for the last month or so, look like I have a pregnancy bump when lying down. Generally carry little weight on my stomach so I can visibly see a lump when lying down. GP did bloods and came back with slightly raised ca125, I think he said 42.
ive had an ultrasound and radiographer was very illusive, she said the doctor would review but she thought she saw a cyst. So now I’m waiting anxiously.
i am late 30s, 2 kids, have endometriosis and had an endometrioma pre first pregnancy. So realistically I know it could be that again but I never had the noticeable bloating. Of course my mind is wandering, my kids are very attached to me and could not cope without me.

Not sure if anyone will read this.
GP called me with results of ultrasound, a pelvic mass possibly ovarian. So they can’t even be sure and now I’m being referred for a CT scan.
quite concerned they think it is cancer as results of ultrasound came back within hours. I don’t even understand how they couldn’t be sure if it was ovarian, which is worrying me too.

Im sorry, it sounds very frightening. My mum had ovarian cancer and it was only diagnosed after the mass was removed. (They had to send the tissue to pathology to determine the type of cell.)

Her Ca 125 levels were in the hundreds when she was treated, if I recall the cut off was round 35 and she’s had levels a bit over since then (40, 50, once 80) and they just keep a watchful eye. Hoping you can get the necessary care quickly. 💐

I had an ovarian tumor, but was a spread from my colon cancer. The tumor which grew extremely big in a year. 2kg is weighed. I couldn’t bend down, it was pressing on my bladder, thirsty, night sweats. They removed my ovaries and tubes. All clear and cancer free. I’m in surgical menopause now, which is crap. But trying to stay clear of HRT. My blood levels were raised.

Thank you. I’m worried and thinking the worst.

I’m 51 with 2 pre teens .

Raised 125 can be down to the endo. I had it and I had a massive chocolate cyst on my ovary.

What is ever is going on in there is pressing on my bladder too. I don’t think I have any other symptoms

This is what I was thinking initially and was the case with my cyst before kids. But I’m concerned with how quickly my ultrasound was reviewed and reported by the doctor.

Did they diagnose via an ultrasound? I’m not sure why they couldn’t from mine

I’ve been through the same over summer this year and similar CA numbers - my mass was found during a CT for something else and because of my age I think I was fast tracked for further tests , ultrasound and another more specific CT scan.

The cyst was 13cm and complex so I opted for full hysterectomy which I had six weeks ago - cyst was borderline but everything else removed had zero sign of cancer so no chemo or further surgery needed.

It is very stressful I know but just have the tests recommended and try not to let it overcome you. I was referred to macmillan nurses , had cancer health advice and was pretty convinced it would turn out that way but thankfully not. Your CA numbers are good and the scans will tell the specialist more so hopefully that is scheduled quickly - it’s routine to be fast tracked so don’t assume the worst

Sorry to hear about colon cancer but very glad your cyst was benign - can’t imagine how uncomfortable it must have been , mine was smaller and that was bad enough ! Hope you are keeping well now ?

I had a similar experience. My CAs were in the hundreds but due to my adenomyosis. I had cysts in my womb too. Meant everything was fast tracked until they could rule out cancer. It's a really anxious time but remember your other conditions, endo and a cyst, could just be the cause of the raised CA 125 levels.

It might be a long haul with the testing and waiting though, I'm sorry.

The ca125 can be raised for lots of reasons, infection, menstruation, because of an ovarian cyst. Mine was slightly raised when I went through a similar thing a few years ago, and my doctor told me that when a woman has ovarian cancer the score is often in the hundreds. I hope you have the ct scan quickly.

Thank you.
yes you are probably right it will no doubt be a long time. Probably even more so with Christmas.

i hadn’t been worried about the ca125 levels given my endo but the fact the couldn’t confirm an ovarian cyst and the speed of the results has worried me.

I take it is was a long time until they ruled out cancer for you? did you have a CT scan?

Thank you. Yes I think it was raised years ago consistently due to my endo. Just the speed of my ultrasound result and the fact I look like I have a pregnancy bump!

My raised CA125 plus bloating put me on the 2 week cancer pathway, so I had an internal ultrasound (clear), followed by MRI (clear), with oncology appts in between. From initial bloods to the all clear was about 5 weeks, which was very impressive given the state of the NHS. Ultrasound results can come back within 24 hours anyway. I've had loads and the technicians are just very efficient.

But it is a hugely anxious time too, and it's pointless saying "don't worry" because it's only natural that you will worry. Just try to keep thinking positive. So far, your symptoms are consistent with endo and having a cyst. Nothing else.

Sending unmumsnetty hugs! X

Daughter had a 27cm ovarian tumour removed last year. Was benign in the end. The majority are.
They should get you in quickly.

Please try not to worry.. I have a 2.5kg cyst removed, along with the ovary it was in. It was benign though I was seen every 6 months for a few years. My kids were very small so I understand the fear but I've come across lots of people with storied like mine.