1st Post - Going through Diagnosis : Hi All, I... - My Ovacome

My Ovacome
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1st Post - Going through Diagnosis


Hi All, I haven't been diagnosed yet but am panicking over the possibility that I have OC. I had a blood test ca 125 which came back at level 51 which they are concerned about. They have fast tracked for a scan but that's not to another week and I'm thinking all sorts. Desperate to know one way or the other. I have a baby of 16 months and put down my bloated tummy to that and having colitis. I'm told the raised level could be caused by something non sinister ie a cyst or endometriosis which I have not been aware of previously. I guess I'm looking for reassurance which I'm not going to get till the scan is done. I just wondered what your levels and symptoms were when you got diagnosed. I'm not in any real pain just uncomfortable and blobby. My Mum died of Breast Cancer at my age so I'm fearing the worst. Can't stop crying. Don't want to miss out on my boy growing up. Don't have anyone to talk to about this. Just Hubby who i don't want to burden too much. Plus got a stinking cold and cough and feeling very sorry for myself. Sorry to put this on you. Just needed to say how I feel. Healing thoughts and hugs to you all xx

9 Replies

Hi Emmie

Some of us had no symptoms. I did not have any and my CA125 was 31 so within normal range. It can also be raised for many reasons such as inflammation of infections and any number of other things.

A scan can show if anything possibly there that should not be but again not 100%. It usually indicates if further investigation is needed such as a surgeon to have a ferret round. (Technical term 😂)

I know you will not stop worrying- it is only natural but try and think that raised results could due to many other things.

You can pour all your worries and fears on this site as we all understand.

Best wishes


in reply to Petrolhead

Love the medical terminology 😂 ❤️Xx Jane

Hi Emmie. I had some bloating and a ca125 of 53. I was told probably endometriosis or a cyst but they wanted to double check. Mine turned out to be borderline tumour with a small patch of cancerous cells. I had surgery, and now im fine, no chemo needed as surgery removed it all. It's very different for everyone but if it does turn out to be something sinister, you could be lucky like me and not need chemo. I guess I'm trying to say it's good that they are checking and if it is the dreaded C, it might not be as bad as we all fear 😊

I'm sorry to hear about your mum. I would suggest asking for a BRAC1/2 test to see if you carry a faulty gene which increases your risk of breast and ovarian cancer.

Don't panic, it sounds like all is under control. This is a great site for advise and support. Keep us posted 😊

Hi Emmie, I can understand your upset but a diagnosis cannot be made by blood test alone. The colitis might raise the bloods, I wouldn't be certain of that though. If you are in the UK, do ring Ovacome helpline on Monday as the Nurse there would have more medical knowledge than us patients. You have to stop crying and stop overthinking because your little boy will pick up that Mummy is upset and he will get upset too, Try and take it one day at a time for now. You are probably miserable if you have a cough and cold anyhow. Maybe you might need antibiotics.

Please try not to panic. Your CA-125 can be raised for many, many reasons that are not sinister. For example, any infection or inflammation in the abdomen/pelvis/chest can cause it to be elevated. The benign reasons you mention (cyst, endometriosis, colitis, infection, etc) are much more common than OC. You are doing the right thing by having this further investigated right away. Please don’t jump to any scary conclusions. You asked about CA-125 numbers at diagnosis... mine was 577, and some people have numbers in the thousands, while some people have no elevation. There is huge variation, but I hope this helps you to not dwell on only negative scenarios before further investigation. Take care and keep us posted.

xx Gina

Hi Emmie, I had some symptoms but I was diagnosed early but I hac some other issues as well as the OC, my CA125 was then relatively low at 69. As the other ladies have said there are lots of things that can cause it to rise other than OC, infections, endometriosis, fibroids (I think) etc etc, I know it’s pointless telling you to not worry, you wouldn’t be normal if you didn’t. At this point a couple of weeks won’t make much difference to the results of your scan so at least you really don’t need to worry about the timeline. Having a rotten cough and cold won’t be helping you either.

You’ve got us lot to talk to and we’re always available, we tend to keep some very odd hours so day or night somebody will be here for you.

Let us know once you get your scan results and 🤞🏻 It’s something that’s easily sorted.

Hugs and love ❤️Xx Jane

A flare up your colitis can definately raise your ca125, so hopefully its due to your colitis but good they are checking it out.i was diagnosed with crohns several years after having ovarian cancer and at one point after a colitis flare my ca125 tripled which really freaked me out . Next time it was back to normal - apparently your gut can secrete ca125 if its inflammed -fingers crossed xx

Hi Emma, my CA 125 was 197 had both Scan and they have come back fine and I’m now waiting for results of another blood test which I hope to get back today. I am still very confused as to why mine was raised and will hopefully get the gynaecologist to help me understand or find out other reasons.

Please stay positive because like these ladies have said it doesn’t always mean the worse.

Stay strong we are all here to help where we can.


Take one day at a time and breathe, go for scenic walks, and try to stay positive. I know this is easier said than done. This is just a chapter, not your whole story.

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