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Worried - ovarian cyst and raised CA125

(155 Posts)
xWurlyCurlyx Sat 04-Apr-15 21:44:48

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.

WhatTheEel Sat 04-Apr-15 21:54:29

I don't have personal experience am but married to a GP and I always worry about ovarian cancer, like any woman. I can tell you this with assurance; it's incredibly normal to have a raised CA 125 with a cyst(s). There are so many benign reasons behind a raised CA 125 that it can't be relied upon as a diagnostic test. It's a guide and better used in existing cancer patients on chemo because chemo patients with dropping CA 125 levels show the therapy is working. So in that regard it's very useful. In your case it will get you the investigations you need which will bring you much reassurance. Good luck! It's a very rare cancer in any case.

Jumpinginside Sat 04-Apr-15 22:26:35

Hi, I had a raised ca125 with endometriosis. I also had a cyst. I have just had an op to remove the cyst and laser the endo by keyhole. The gynae doc was not concerned about the ca125 result and said if it was anything awful it would be sky high. I was told that it was just an indication of something going on. They may want to have a look to see what is going on, but I don't think they would remove your overy unless it was unhealthy. Gynae are the experts, so should be able to give you better advice. Gp's are not experts and it is their job to figure out roughly what is going on and refer you to the right place.

Hope this helps, I know the waiting is awful.

xWurlyCurlyx Sat 04-Apr-15 23:09:39

Thank you so much for both of your replies - they are very reassuring on what has been a very scary and upsetting day and are very much appreciated!

PrimroseVilliers Sat 04-Apr-15 23:15:52

You've had the scan first so concentrate in the fact that nothing sinister was discovered! OC is incredibly rare in women before the menopause and it's an absolute fact that the CA125 test will be elevated due to the fact you've got benign cysts at the moment

I don't think you have anything to worry about re OC. Hope you're feeling more reassured

xWurlyCurlyx Sat 04-Apr-15 23:37:40

That's what I was hoping re the scan Primrose - the GP repeated that the sonographer just planned to rescan in 8 weeks, which I keep reminding myself must be a good thing. Thanks for your reply.

schilke Sun 05-Apr-15 08:09:06

Wurly - I've just had the worry of raised CA125. Had some routine bloods for breathlessness and fatigue and my CA125 came back at 115. My GP pressed the panic button.

I had a scan last Wednesday and the sonographer couldn't find anything. She did say that one of the issues that could raise CA125 is fibroids as well as endometriosis and general cysts. I have a fast track appointment at the hospital on Tuesday (scan was at my local community hospital), but I can't see there is much left to do, however sonographer said they might want to find out why my CA125 is raised.

They have your ovary under watch and the raised CA125 is probably due to the fibroids, so I'd try not to worry....I know that's easier said than done.

xWurlyCurlyx Sun 05-Apr-15 10:22:45

Hi Schilke, I'm sorry that you're going through this too - it's such a scary time isn't it. Fingers crossed that you have a useful appointment on Tuesday and they get to the bottom of it for you.

PJsAreDaywear Sun 05-Apr-15 11:28:42

Wurly I'm going through the exact same thing.

I was admitted into A&E with severe abdominal pain. I've been to the GP about this 2 years ago, and nothing happened, so I'm so glad I went to A&E because now I'm under the care of the Gynae consultant.

I had a scan , where they found a 6cm ovarian cyst, and ordered a CA125 test among others. 3 weeks later, I had a second scan and was told my tumour markers were raised on 2 tests - annoyingly, they didn't tell me what the levels were and I didn't think to ask. All they said was that they were "considerably higher".

Apparently, it's normal with endometriosis, which is what I strongly suspect I have. I've been referred for a CT scan, presumably to check for other tumours, and then a laparotomy to remove the cyst and investigate endo.

I'm freaking out a bit, but trying to be sensible and prepare myself for surgery. I've been told that depending on the result of the CT scan, I'll either have surgery very soon (if it's cancer), or within the next 6 weeks if it isn't.

Good luck to you and schilke

x

xWurlyCurlyx Sun 05-Apr-15 14:27:20

Oh PJs I'm sorry you're going through this too. I have read a lot about the endo link too (I have always had issues with heavy/irregular periods and recently flooding) but until you know for sure it's no fun is it sad.

Let me know how you get on - sending you lots of luck too x

Pandsbear Sun 05-Apr-15 18:17:41

Hi OP and other posters, my gynae said that Ca125 is a measure of inflammation in the abdomen - and so mine was raised because of an endometrioma due to endometriosis. My Ca125 went up between blood tests to about 150 (I think). Hope this helps as general info. Best wishes.

xWurlyCurlyx Sun 05-Apr-15 18:36:44

It really does helps Pandsbear, thank you. It is so funny how you can go from knowing nothing on a subject to desperately trying to understand all the intricacies and nuances, all in 24 hours!!! I had never heard of CA125 36 hours ago......

PJsAreDaywear Sun 05-Apr-15 22:07:26

Yes, it's amazing how much you can learn from Dr Google isn't it, sometimes a little knowledge is a dangerous thing.

Pands that is reassuring - my cyst was diagnosed as an Endometrioma, so that makes sense.

I'm currently stretched out on the couch nursing my hugely bloated belly after overdoing it gardening today. I'm just pissed off being an invalid before I've even had my op!

Does anyone else feel hugely bloated with their cyst? I thought I was just getting fat, but now I realise it's due to the orange sized growth in my abdomen! Can't wait to have a normal stomach!

schilke Sun 05-Apr-15 23:50:46

Good luck to you both! I'm still slightly worried as to why my CA125 is raised when the scan showed nothing was out of order in my ovaries.

xWurlyCurlyx Mon 06-Apr-15 08:35:19

Schilke have they checked you for endometriosis? I don't think they can diagnose that properly without doing a procedure with a camera. Crossing my fingers for your appointment tomorrow.

PJs I am not bloated but I am getting nagging pain from it - I was gardening yesterday and was having to give it a rub every so often.... I had a minor panic as I started getting similar pains on the other side and convinced myself it had spread.....until I looked at the calendar and realised I'm ovulating. I'm clearly paying far too much attention to my ovaries at the moment.....

schilke Mon 06-Apr-15 10:14:32

Ha ha. I had no pains until the gp mentioned ovarian cancer and then every 2 seconds I had a pain! I didn't realise that about endometriosis. I'll find out tomorrow I suppose. My period was happening when they took blood and I have read that can raise the levels. Al so wondering why I've suddenly become more anaemic - haemoglobin dropped from 11.7 to 10.5.

xWurlyCurlyx Mon 06-Apr-15 12:04:33

Schilke my period was happening too - I had read the same thing, and I've read that sometimes you're told not to have the test done during your period for just that reason. Could the anaemia be period related too? I know it can affect me when I have a really heavy one.

PJsAreDaywear Mon 06-Apr-15 17:51:53

Good luck tomorrow schilke - is it just a follow up appointment, or are you having another scan?

My period was happening when I had my bloods taken too, that could explain a lot. Speaking of which, I got my period today, first time since I went into A&E so I was a little worried that the pain might come back. I've been good so far, just very bloated with the constant niggling pain. I'm also getting pain in my hip and shoulder as well, I guess it's all related as I'm all out of line with the swollen belly.

The other thing I didn't mention is that I've been ttc for over 2 years with no luck sad - at least this explains the infertility, but it makes me all the more scared of losing my ovary.

schilke Mon 06-Apr-15 19:03:28

Bit complicated...my GP put me through on the suspected cancer 2 week rule (just on the CA125 result and being anaemic), so the appointment tomorrow is the fast track appointment. However, he also sent me to small local community hospital for a chest x-ray and a transvaginal scan - both of which were clear. I was told I still need to go to tomorrow's appointment, but I don't really know why?!

The letter said it could last 3 hours, but as I've already had scan and x ray, I'm hoping it will be quick. I hate big hospitals and get very anxious in them...that's the reason I had home births! I've been very quiet today as I'm dreading going to a proper hospital tomorrow.

PJs Do you know when your CT scan is?

PJsAreDaywear Mon 06-Apr-15 20:04:23

No, I haven't had an appointment for the CT yet, but the Gynae Dr told me that I'd get it 'within a week' and that was last Wednesday - but we've had 2 Bank Holidays to scupper things between then.

She also told me that the team of Drs meet every Monday to discuss cases (I'm guessing this is the medical experts team, or perhaps the oncologists?) and will decide whether to take me on to Oncology based on my blood results. But of course, today is a Bank hol, so I've no idea when they will meet... maybe tomorrow?

So your appointment tomorrow is with the Gynae doctor, or the Oncology Dr? Either way, it's great that they're taking it seriously and checking everything out. Good luck, and do let us know how you get on.

Thymeout Tue 07-Apr-15 00:27:16

Just to say my Ca125 was 130 - 'normal for you' - when I had a 2 kilo Borderline tumour removed last summer. 48 is v.low. Some women have scores of 8/9,000. Any sort of infection can raise the levels.

There's a big difference between an Ob-Gynae and a Gynae-Oncologist. It's a horrible feeling walking into Oncology Outpatients, but you need a Gyne-Onc to say what is NOT cancer as much as to say what is. My Gyne consultant clearly thought it was cancer - I'm post-menopausal - but the Gyne-Onc, from the same scans, told me immediately he thought it was benign.

Schilke - I had a CT abdo and chest and MRI pelvic and abdo. But they knew I had a large tumour. They might want to do a CT scan to check out your abdomen? After my experience, I feel much safer in a big hospital where they see a lot of cases.

Fingers crossed everyone gets good results. Only 5% of ovarian cysts are problematic!

defineme Tue 07-Apr-15 00:37:37

I had similar level test too about a year ago.To cut a long story short I had a total hysterectomy due to endometriosis filling my abdominal cavity and causing an 8 month bleed/severe pain etc. I had no cancer and the test was entirely because of endometriosis. ..which is crap and had glued my bladder and bowel to abdominal wall, but certainly isn't the same as cancer.

xWurlyCurlyx Tue 07-Apr-15 18:02:50

Schilke how did you get on today? My GP called to offer me a consultants appointment on Wednesday, so only a week to wait which is a relief. Did you hear anything today PJs?

Thanks for your stories defineme and thymeout - every story I hear makes me feel a little less panicky.

schilke Tue 07-Apr-15 21:23:18

Well today I had an internal examination and an endometrial biopsy taken. I'm a bit of an enigma. She said that most people would only have had the CA125 test if they had symptoms of bloating, pain, bleeding. So the fact I have none of those, but my level was high means that they now need to find out why.

She thinks possibly there was a cyst which burst and that could have caused the levels to rise (there was some fluid present in the scan), so I've had a blood test to check CA125 and some other nasties. She's hoping the level will have gone down and then they can ignore everything. If it hasn't then I go back for another scan and they may remove my ovaries as a precaution a wasn't expecting that! Her manner was a little brusque, but the nurse was lovely.

Glad you've not got to long to wait for your scan.

Thymeout Tue 07-Apr-15 22:58:04

Schilke - Removing your ovaries sounds a little extreme! Just on the basis of a raised Ca125? Do you have a family history of breast or ovarian cancer? The Angelina Jolie gene? Cysts on other bits of your anatomy can raise Ca125 levels as well.

Having a look at your ovaries might be a good thing, but if they're really thinking of removing them, I think I'd want a second opinion! Especially as you don't even have any cysts. Btw, the current thinking re ov-ca is that it originates in the fallopian tubes more often than was previously thought, not the ovary itself.

March was Ovarian Cancer Awareness Month - I'm wondering if that was why your GP was so quick off the mark. Was this a Gyne-Onc you saw or just a Gyne?

When will you get your results?

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