High CA125 result. How long before diagnosis?

[Charltonjl]

Hi all, I've had awful tummy issues for months now (severe bloating, change in stools, pelvic and abdo pain etc). My CA125 result came back at 68 last Thursday. I received a letter on Friday (2WW) to say I have a triage appointment on Tuesday. I was wondering what the next steps would be? I have a 7 year old and 20 month old and am panicking. How long have you lovely ladies had symptoms for? Mine has been almost a year but has got progressively worse recently :(. Thank you x

[Lovedogs41]

Hi there,Bless you,it is a really worrying time you are going through at the moment,your mind goes into overdrive and especially having very young children aswell.I actually did not have any symptoms really until a month before diagnosis with stage 4 hgsoc last February,it came as a complete shock.I am 42 with two girls aged 10 and 14.The next step with me was firstly an ultrasound which did pick up the mass,followed by a ct scan to see if had spread elsewhere.

It is worth mentioning that ca 125 can be elevated for other health conditions,such as ibs and other digestive tract conditions,so it may not be something sinister.

What I would say is be your own advocate,be pushy until you get the right diagnosis.

Wishing you all the best,let us know how you get on.x

[Charltonjl in reply to Lovedogs41]

Thank you so much for your reply. I'm not surprised you were in shock, that's so quick. I too am 42! I am hoping it's not the worst and will keep you updated Do you know whether an ultrasound will definitely pick up masses? Sorry to hear what you've been through and really hope you're ok xx

[Lovedogs41 in reply to Charltonjl]

I do believe that somethings can get missed still on an ultrasound,so I would definitely ask for a ct aswell especially if your symptoms do not start to improve.I am doing well at the moment thanks and have been clear since last October.Really try to stay positive,I know how hard it is at times,particularly when you are waiting for results but I think a positive mind is so important.Feel free to ask any questions,you are welcome to pm me,take care x

[Charltonjl in reply to Lovedogs41]

Thank you so much, that's very kind of you! And yay to being clear since Oct!! I will push for a CT scan if I have to but will keep you updated. Thanks again ❤️x

[Tesla_7US in reply to Charltonjl]

I had both abdominal and TV ultrasound which failed to detect oc. A CT/PT scan with contrast or even MRI are better at detecting early oc. My colonoscopy, endoscopy and cytoscopy were all clear because HGSE OC does not infiltrate those organs until it is very advanced. I spent 2 years going to different docs. I told them all I was a BC survivor. Not one of them ordered a CT scan. Be persistent. Strongly advocate for yourself. You know your body best. Don't let anyone dismiss your symptoms. I was told I had IBS, but you don't get that overnight at my age. I've been fighting this for 6 years. I'm sending you my best energy and hope that you do not have cancer and that whatever you've got can be effectively dealt with. Much Love.💗💗💗

[Charltonjl in reply to Tesla_7US]

Thank you so much, this is all good to know. But so sorry you've had to go through this. I had no idea this was even an option for me until my doctor called me on Thursday with my CA125 results. Thanks for your wishes. I too wish you all the best lovely xx

[Tulips66]

Hi, hopefully all the stomach issues you have been having don't turn out to be OC & that there is some other reason for them. The Ca125 cannot be used on its own as a diagnosis, as many ladies on here had low Ca125 markers & still ended up having OC. My Ca125 was nearly 2,500 & the only symptom I had was a discomfort in my tailbone which I thought was caused by some house painting. I eventually had some heavy bleeding & decided to get it investigated. My GP quickly referred me to a gynaecologist who examined me & did a biopsy. He told me there & then that I cancer but it would be confirmed after the results of the biopsy, a Ct & Mri scan came back. Unfortunately his diagnosis was right. You will have to have scans & other tests to rule out OC & if they don't do them I would advise you to keep pushing them till you get to the bottom of these issues. Your children are so young & I am sure you really could do without all this worry & stress. I will be thinking of you & hoping that it will turn out to be nothing serious. Good luck on Tuesday & Please let me know how you get on X

[Charltonjl in reply to Tulips66]

Aww thank you so much. Yes I worry for the kids most. In the UK the NHS have to follow the NICE guidelines so I hope I get tested appropriately but if not I'll definitely push especially as it seems ultrasounds can often miss it. If you don't mind me asking, when did you bleed? My periods have got heaps heavier recently but I haven't bled otherwise. Sorry for what you've been through, sounds rough. I will keep you updated. Thanks again xx

[Tulips66 in reply to Charltonjl]

Hi again I started bleeding about 4 weeks before I went to my GP, but as I had a mirena coil in I just thought it had stopped working. I had been to my GP a few months earlier as I had the coil in 5yrs at that time & she said that it was OK to leave it in for another 2yrs as I was 52 yrs at the time & going through the menopause so I thought the heavy bleeding was connected to this. Little did I know that it would turn out to be caused by a tumour & been diagnosed shortly after with OC. I just hope that it turns not to be the same in your case 🤞X

[LallyBaBa]

Such a worrying time for you Charltonjl. I'm so sorry. My MIL was diagnosed in January, after a DVT. She had an ultrasound which showed masses on both ovaries, and that the blood tests were enough for her GP to be very confident in diagnosing OC. She was the referred to a gynae consultant who did a CT. The cancer was inoperable at the time so she had some biopsies of her omentum taken, via guided needle, to confirm the cancer and type. So it is quite a long process, but a good GP can make a pretty good and informed assumption, I think. MIL has now had 4 rounds of chemo and successful debulking surgery, and is much better than she was at the time of diagnosis, despite the chemo and surgery side effects. We're feeling positive. Good luck with the coming days and weeks, I'll be thinking of you.

[Charltonjl in reply to LallyBaBa]

Oh wow, all happened very quickly for her :(. You seem like such a lovely DIL! I'm hoping she is ok and you're all coping well too. It must have been very scary. Thanks for your wishes, it means a lot xx

[LallyBaBa in reply to Charltonjl]

Thank you. We are very close, so it's been a pretty awful time. We're just lucky to live close to each other and be able to be at her side for it all. The DVT was her first major red flag symptom, but once they started looking back it was the classic case of niggling things which were brushed aside or ignored because they didn't seem serious. Hopefully yours will turn out to be nothing sinister. Fingers crossed. x

[Manchesterlady]

Hi ,I had recurring urinary infections and a pain like a stitc in my right hand side .after a lot of fuss at the doctors he did a ca125 test which came back in the 700 s .Sent me straight in to hospital for ultrasound, waited for two days for ct scan . Then referred a few weeks later to gynaecologist for a laperoscopy , followed by chemo.

It does take a while to get all this done .

Your symptoms could be caused by lots of thing , I know how worrying it can be , so do try not to think the worst case scenario ( not easy )

Let us know how you get on .

Good luckxx

[Charltonjl in reply to Manchesterlady]

Thank you for replying. It does seem that the symptoms are varied so I'll try and stay positive. It's the bloating that worries me but you didn't have that and still have OC :(. So sorry to hear that. Really hope you're ok and on the right pathway now. I will keep you updated x

[Hidden]

Hi there so sorry to hear of all you are going through and as others have said the waiting is really difficult. 25 years ago I was 42 and had very similar symptoms to you which turned out to be a very large tumour which was an early stage ovarian cancer which had not spread . After surgery and chemotherapy I have been fine since then.

[Charltonjl in reply to Hidden]

Thank God. I'm glad you've been ok since xx

[mupash]

HI-

HOPING YOU GET GOOD NEWS BUT YOU HAVE TO BE YOUR OWN ADVOCATE.

YOU COULD ASK ABOUT HAVING A PET SCAN DONE. THEY MAY PICK UP WHAT A CAT SCAN DOESN'T IN MANY CASES, MINE BEING ONE OF THOSE CASES.

BEST OF LUCK!

LEE

[Charltonjl in reply to mupash]

Thank you so much, that's good to know. I had no idea of what to expect so will see how Tuesday goes and the results from any scans and then go private if need be. Glad you finally got a diagnosis at least :). Best wishes xx

[mupash in reply to Charltonjl]

BEST OF LUCK! LEE

[Tootinggirl]

Before I was diagnosed with Ovarian Cancer my CA125 was 438! So 68 doesn’t sound so high.

[Charltonjl in reply to Tootinggirl]

Sorry to hear that and hope you're recovering well. I've heard that some women with levels similar to mine or even lower are already at stage 3/4 so not sure it's always reflective unfortunately x

[Buddysmum124]

I'm in exactly the same boat as you I've been at this for liver a month the worry is crippling I then put it out of my mind then boom, I'm having lots of blood tests and I've had an MRI it's just the waiting isn't it sending lots of love Sarah x

[Charltonjl in reply to Buddysmum124]

Oh I'm sorry to hear that. Do keep me updated. Wish you all the best xx

[Charltonjl]

Hi lovely ladies, so a quick update. I had an ultrasound yesterday and an appointment with the oncologist today who confirmed that I have a mass/cyst (unsure) on my right ovary so I'm being sent for an urgent MRI scan. Everything is happening so quickly (I only found out that OC could be a possibility last Thursday afternoon!). It's a lot to take in. What can I expect after the MRI? Thank you ❤️x