Anyone had ovarian cancer?

[raspberrytipple]

DH and I have been trying to conceive our first baby for about 2 years with no success and recently started the process of investigation. I had some initial blood tests a few weeks ago and the GP said that one reading, an enzyme that sits around the ovary had come back high but this was not likely to have impacted on conception as such. I had to have a re-run of that test which was done last week and the results came back Tuesday so I saw the doctor today to discuss them.

Basically, the test is a CA 125 test, it should be at the highest around 34. The first test I had done came back at 57 and it has now dropped to 38 so still higher than the 10% leeway they allow but only just. He said not to worry but was a bit agitated that my appointment with the gyne isn't until 28th Feb and said he would write to him. Again, he said not to worry but because I now know the name of the test stupidly I googled when I came out and found it is a test they do as part of a diagnosis for Ovarian cancer so now obviously I have panicked myself a bit. I have to have the test re-run again in three weeks time.

I'm guessing from what I have read that if it was something serious the measurement would not have dropped as it has, it would have stayed high or increased.

Anyone have any experience? Do you think it is worth just having a word with the GP? He's very nice and happy to chat on the phone but I've seen him so many times just recently I feel like I'm taking the pee a bit. He did say not to worry but I am!

If you have googled C125 you should also see that it is a very inaccurate test. it picks up high scores for lots of other reasons which is why it is only 80% accurate even in women with advanced ov. cancer.

wait and see what happens and try not to worry.

Thank you. I've just spent an hr googling and found what you have just said. I will still be anxious for a few weeks yet. Hopefully the next blood test will lower again and in 8 weeks I have the gyne appointment where they are doing a pelvic examination whatever that entails. Dr Google is not a very good friend sometimes is he!!

Oh raspberry I'm sorry to read this. Please remember that Google is not your friend in these situations - step away from the keyboard!

In the meantime, un-MNetty (((hugs))) for you.

Hi raspberry, I think you should phone your GP just to put your mind at rest. I think if they were worried they would be rushing things through and explaining things to you. I imagine they are trying to rule out everything to start with. Sorry I can't be any use but like cave says try to stay away from google, I know it's hard! Xx

Thanks guys! Feel a bit calmer today and had a read on a few sites, so see its definatly not the only indicator and even then not a good one. Will be having more blood taken in a few weeks anyway so will wait to see how they look

I went through this in Spring last year. Elevated CA125, higher than yours but not in the 100s. For me it wasn't anything to do with ovarian cancer, it turned out to be linked to endometriosis and I had a cyst inside one ovary (since removed). Do not Google it will only make your head spin! If you find you are fretting please speak to your GP again - he/she won't mind.

Raspberry just wanted to add ... step away from google. Pleased you are feeling a bit calmer - but as others have said if you feel you need more of an explanation of it all then get yourself down to the GP. Sounds like if it was serious they would not have let you be and would have had you in asap. Hope the next set of tests go well for you xx

I have just had this test done yesterday as I've had an ultrasound that has shown up a 6cm overian cyst which is very painful, messing up my periods, causing constipation etc. I've got other medical stuff going on too . I am going to see my doctor on Monday to get the results. I am finding my favourite music very therapeutic! And Downton Abbey on DVD. I gave up googling when I realised how much time and energy I'd devoted to it that could have been spent doing nicer things. Things that make me happy - maybe the same would work for you? Fingers crossed for you.

Do you have any other health issues going on? How are your periods, bowel, bladder and appetite? Not that I'm a doctor. But just having a think about it as I'm on the other side, bloods came back fine but I have problems with bowel, bladder and appetite slightly reduced. Waiting on more tests. Big hugs xxx

Hi all, thanks for your messages.
Pandsbear and Holo I am wondering whether they might find a cyst or something now. Im going to push it to the back of my mind until the next set of blood tests.

Ratata I feel fine really although I do get stabby pains in my abdomen quite often, almost like mild stitch pains so not particularly bad but noticeable. I also have a bit of a dodgy tummy quite often, bit of bloating, well, a lot at the moment but I'd put that down to bad diet then forgot about it after I saw the nutritionist back in Nov because I started eating really healthily. I'm quite a farty person too. Not sure if that means anything. I'll make sure I make a note of everything for when I go back next. It's so difficult isn't it, I never think through what I say properly when they ask about symptoms because I feel under pressure then stress so rush what I say :/

Make a list of it all because those symptoms sound as random as mine are and it's hard to really pin point the pains. If it helps, I have the same symptoms along with frequent cystitis. Know how you feel hun. Let's just get on with things and deal with results etc when we actually know. It's more likely to be something not serious. Have a great weekend! X

For anyone who thinks they have these symptoms, can I recommend a site- go the the charity Ovacome.

Go to the page which says BEAt

there is a link to a chart which you can take to your GP.

Thank you for that, AG.

that's okay- lots of info on the site www.ovacom.org.uk (Might be Ovacome??)

Basically ca125 is a biomarker which is not specific to any one condition. It can be raised in healthy women as a result of normal menstruation or pregnancy. It can also be raised in many benign conditions including endo, fibroids, ovarian cysts, PID etc as well as non gynae conditions such as pancreatitis. It can also be raised in cancer cases, but due to its non specific nature it is not used as a routine screening test for cancer. It is mainly used to monitor treatment in people who have known cancer with a very high ca125 as generally if the level falls, that suggests treatment is working. But please remember; the vast majority of people with a raised ca125 do not have cancer, and 20% of those with cancer do not have an elevated ca125, so it really is a non specific and generally unreliable test. Hope that helps a bit :)

Thanks Little!

I've checked out Ovacom amelia really useful site so thank you for that. I don't think I'll bother the GP again now having seen everyone's responses, I panicked myself unnecessarily but am going to keep a note of all my aches and pains for the next appointment! He'll think I'm a right hypochondriac.

Little miss lemon, thanks for the info about the CA125. If it's that unspecific though, I wonder why I've had it done at this stage, as from what you say, it wouldn't give any info that would help towards a diagnosis. Hmm....

Raspberry, take care of yourself! Hope all resolves with you.

I think they just take the ca125 as a baseline. if its very elevated (ie in the thousands) with no obvious explanations then it prompts rapid investigation. if its mildly elevated then it mpay prompt less urgent further investigation such as a pelvic ultrasound for things such as cysts , or swabs to rule out infection etc. It also helps establish a trend if multiple tests are carried out.

Thanks LML. I've done the sympton tracker, which is a bit scary really - I've gone to the GP 5 times since August with these symptoms and had an ovarian cyst diagnose by ultrasound a few weeks ago. What I didn't realise was how much what's wrong with me fits the profile . I'm seeing my GP and my work line manager (who is being magnificently supportive, apologising for not picking up on it sooner - duh, neither did I!) on Monday. Fingers crossed, and lots of Downton and Spotify until then.

The symptoms they list in there are pretty non specific too so the overwhelming likelihood is its not anything serious but its good you're getting properly checked out :) try not to worry tho (easier said than done). I had a ruptured ovarian cyst when i was 18 and aside from being very painful, it was fine and no pros since. hope all goes well :)