High CA125

[AGreatUsername]

Has anyone got experience of this and it turned out to be something benign? I have had some noticeable bloat for 9 weeks now, following an upset tummy which never really recovered.

i went to the GP 2 weeks ago who sent me for blood tests. They revealed low iron, high platelets and a CA125 of 420.

I have little in the way of other symptoms, no gas with the bloating (feels more like liquid, pushing under my ribs which is another source of worry from google) and the odd stabbing pain. Normal, regular periods. I am so so worried.

Forgot to add I have an ultrasound booked for Thursday under the 2 week pathway and the closer it gets the more I worry!

Hi - yes, I had this and it turned out fine.

I had an MRI which showed up endometriosis and adenomyosis but nothing more worrying.

I still remember feeling sick with worry so I understand.

I was asked to have follow up blood tests to monitor levels to make sure they didn’t increase and once they were satisfied they weren’t rising that was that.

Hope all turns out well for you too

Yes - it was an ovarian cyst and it was benign albeit painful.

Me, higher number than yours and it was fibroids and adenomyosis.

Hi, I'm afraid I don't know the answer but excellent that you've sought advice quickly and are getting checked on Thursday. Try not to worry and see what they say. The normal periods sound positive. Is someone going with you?

Thanks all, very reassuring. My husband is allowed in to the waiting room but not when I see they sonographer/doctor. I’m really hoping it’s something minor and fixable but my mind keeps travelling to the worst option of course! It totally ignores the “10% turns out to be cancer” reassurances to be found online and obsesses over the chance it’s that.

Yes. It was an ovarian cyst. Required a meeting of consultants as it wasn’t see-through.

Was booked in for removal when it ruptured naturally (albeit painfully). The CA125 levels reduced, but we’re still a little high but remained stable.

I’ve since had many more cysts (who knew I could grow things so brilliantly!) and finally have been diagnosed with endometriosis.

Currently just had another CA-125 test and a scan request put through for my ovaries today due to pelvic pain, problems weeing. I’m guessing it will be another cyst, possibly might cause a higher level of the blood test due to endometriosis.

I have been looking at Google tonight, worrying that endometriosis has been masking symptoms of ovarian cancer but I’m literally overthinking things.

My doctor is being super efficient in ruling things out. I also have cervical cysts seen at my cancer smear and I’m awaiting a camera check on this with the cervical erosion. I think this is probably causing more pelvic pain, swollen tummy etc.

Try not to worry. Levels can rise for a few things like others have said. I hope this helps. Glad you are getting seen so quickly and your husband won’t be far away during this process.

My friend had a sky high score, well into the 100s, and it was an ovarian cyst. Good luck OP

Thanks for all the replies. I’m absolutely bricking it about tomorrow, so nervous! Can I ask, for those who had cysts with bloating, was the bloating gassy? I look SO much bigger than my natural size but I’m not feeling gassy at all.

Yes, very gassy, to the degree that it was socially awkward.

An update from today.

Its not great news. The consultant gynaecologist who did the scan confirmed there is a mass, which looks like cancer. She couldn’t tell whether it was from my left ovary or bowel as it was not possible to see my ovary at all. I have a CT scan hopefully next week.

ladies, if you’re bloated but otherwise fine, please don’t brush it off as nothing. Get checked. I am absolutely terrified, but also glad I’ve raised this as soon as I noticed symptoms.

I'm sorry to hear your news isn't good, OP - thank goodness you got it checked out as soon as you were worried. It sounds as though they are getting you quickly onto the treatment pathway if your next scan is next week - I hope you get more answers from the CT scan

Hopefully things should move quickly now to get you the answers you need to decide what treatment to have.

Oh bless you OP, I understand your fears. I've been very bloated with a twinning groin, long story short after a cytoscopy last week I have bladder cancer. The clinician doing the I ages said it looked early and superficial but that doesn't really explain my bloated stomach.

Had a CT scan today but no results yet. I am absolutely terrified but putting brave face on for everyone else.

Happy to support you on your journey ❤️

That should be a twingeing groin, I definitely don't have twins :-)

@WakeyCakeyHeart funnily enough I do have twins! I’m sorry you’re also going through this. Best of luck with your CT results, happy to support each other if you ever want to PM.

thanks to all other commenters, much appreciated xx

@AGreatUsername crumbs, that's a bit spooky :-) I'll let you get your head around the next few days amd I'll pop you a message x You aren't alone x The NHS has mobilised very quickly for me, I had my cytoscopy last sat. I'm holding on to the fact my most recent bloods were pretty normal (not CA125 though, this wasn't tested).

I absolutely concur that if something doesn't feel right,get it checked , bloating especially x

I’m sorry to hear it’s not something simple. It sounds like they are fast tracking the next scan for you. I hope you get more answers. It must seem like a long time to wait. Hugs 💐

A small update on this, just in case future ladies google and want a full story. The CT showed 2 very suspicious masses. One on each ovary. After the CT I had an ascites drain (2/10 do not recommend unless really needed. Very sore and uncomfortable, hideously painful being removed, BUT much more comfortable after fluid has gone!) done in hospital.

I am now booked in for an urgent primary debulk which is a hysterectomy on steroids, removing uterus, tubes, ovaries, cervix, omentum, possibly appendix or any other pieces of me that look dodgy. Menopause at 36 is not something I am looking forward to but if this keeps me healthy I am all for it. No answer re cancer yet as the fluid biopsy is not back.

Goodness, that is a lot to deal with. Lots of luck for your operation, and I hope you won't need any further treatment

I have everything crossed for you. Glad your investigations have been so thorough and things are moving quickly x Big gentle hugs to you OP xx

Just dropped in to see how you're doing OP ? X

Hi, Just wondering how you are and what happened following your operation and tests. Really hope you’re ok. I’m going through something similar in regards to your first post xxx

Hi @Kirstyyypops sorry to hear you are going through similar. Have you got a scan lined up or any symptoms?

I am okay, I was diagnosed with stage 3 low grade ovarian cancer, had a major surgery followed by 6 rounds of chemo and was then put onto a hormone inhibitor. Unfortunately it had spread into lymph nodes in my chest and neck but I am currently totally well and trying to remain optimistic.

Happy to have a chat if you need one.

Thanks for the reply @AGreatUsername I’m sorry you have had to go through all of that. I have been an urgent referral to gyne I’m for an ultrasound. So hopefully in the next two weeks I’ll be seen the gp said. Concerned as ovarian cancer runs through my family, great grandmother died from it and my nanna had a full hysterectomy from it. So far nothing from mum.

My symptoms have been here for about 6 months. Diagnosed with iBS originally, bowel pain and affected poops. But then the last three months lower back pain, bloated tummy, pelvic pain. So sent away for bloods. Came back very low iron and practically none existent B12 with abnormal CA125. Hence the referral. So I am a little worried given everything. I’m 37 mum of 3 youngest is 2. So I’m praying to god it’s endo or hormonal. Hard to relax atm.

id be so grateful for a chat thank you. Mindful I don’t want to add stress to you. Just a scared mam x