Ca125 Levels - Low?? Normal??

[Sparkleshimmer]

Hi all

I posted a few days back (as I am on eggshells - it’s such an awful feeling) that I have a 4.2cm thing on my left ovary and have been put on the pathway for OC.

So I had my Ca125 test last week, that came back normal - at 13, my question is - how is that looking for me? Do you think I am going to be ok? Has anyone ever had normal or low Ca125 and still been diagnosed OC?

I have my MRI on Thurs this week x

Thanks so much for your help x

[Gettingoldnow]

hi there please do not start worrying yet I have a 4.5 cyst on my left ovary and had all sorts of tests and all came back with it was this then it was that so after a lot of me questioning the oncologist I asked for a second opinion .it came back as a non cancerous fibrothecoma and I live with it as it doesn’t give me to much trouble .my CA125 has been done a couple of times at 13 so please if you have any doubts do ask for a second opinion .I could have had it removed but at my age decided not to play about with it unless it gives me trouble .so please try and relax

[tealblue1]

Hi there Sparkleshimmer,

I was diagnosed with OC last year but my bloods were normal and My CA125 was within normal limits. I had clear cell which doesn't always show up in bloods. However once the doctors put me on the pathway, everything moved quickly and it was comforting to know that a plan was made and surgery happened quickly. It is tried and tested treatment. You may have a cyst - it is very common and can be dealt with easily. Fibroids are also very common. if it turns out to be more, catching it early and it being localised will give you a very good prognosis. The not knowing is the worst time and your mind will be running the worst case scenario. Try to distract yourself with things you enjoy doing and not second guess the outcome - it is just making you suffer and you need to be kind to yourself at this time. Wishing you peace and a positive outcome .

[Sparkleshimmer in reply to tealblue1]

Thank you so much for your reply

I am hoping so much that it’s not but you have reassured me that there is hope and so much in place if the worse should be ❤️

Thank you and I hope you are well xx

[cavebaby]

Hi Sparkleshimmer,

I am on the same path as you, but a bit further along. I had a cyst found and normal CA125 in Jan but unfortunately my MRI has shown probable mucinous OC, which is quite rare. The good news is my gynae/oncology consultant thinks its early and I already have a scheduled surgery date in a couple of weeks and have a CT tomorrow. I am trying to keep from over thinking till post CT.

I think its good that things are moving fast as it stops you from overthinking too much. So, hand holding for here for you and fingers crossed you get a good result. xx

[Sparkleshimmer in reply to cavebaby]

Ahhh I hope all goes ok for you tomorrow lovely x

It’s so worrying isn’t it - as soon as you hear that “C” word 😢xx

Sending lots of love and positive energy your way, whatever the results - stay strong x

[cavebaby in reply to Sparkleshimmer]

Hi Sparkleshimmer,

hope the MRI went ok today, I know some people hate them, and fingers crossed for a good result for you x

[Sparkleshimmer in reply to cavebaby]

thank you so much 🫶🏻

45 minutes I was in the flippin thing 😬

They put the contrast through the cannula in the last ten mins. I’m just hoping and praying alls ok x

Thank you for your message x

Hope you’re ok x

[Sybil71]

Hi, I had a slightly over the normal CA 125 around 42 (normal was 35), my gyneacologist didn't worry and told me to come back in 3 months. I was confused and my ROMA Score (Ovarian Malignancy Risk Algorithm) came in; it was way above the limit. He still told me to wait. But I didn't and visited a gynecologist who is specialized in oncology; he immediately sent me to MRI and there it was; stage 3 OC. Your level is very low compared to mine but it is worthwhile to get an MRI to make sure. My debulking surgery is so far successful but i'm still having an MRI every 3 months although my CA125 level is below 10. It will be 2 years in April since surgery. Hope everything goes well on your side. 🙏

[SopSinger]

Unfortunately CA125 on its own is not sufficient to diagnose or rule out ovarian cancer. You must have a scan to show what is going on. I'm glad that you have the scan booked and that you haven't too long to wait. Hope it turns out OK for you.

[Leniko]

CA125 can be very telling w some patients, and not very telling with others. Try not to panic. 🙏❤️

[sandraelizabeth]

I have a 6.5 cyst on my left ovary which they say is non cancerous. I have been taking Letrozole for 4 years after recurring breast cancer .

With some brands of Letrozole I had bad joint pains . Now I have found one brand that is fine for me . If you have pains try another brand until you find the best one for you .

[MamaFrajuler]

Yes - I have. firstly every1 has their own journey with OC ..its important to remember this.!

At first diagnosis 4 1/2 yrs ago, I had a 15-16 cm 'balloon' cyst, found on an urgent CT scan, while on holiday. When discharged to my own hospital, my CA125 was 35 (exactly on the borderline between normal and needing investigating..) subsequent surgery found established tumour, with ascites, staged 2c. this was removed, 6 cycles chemo, remission for 3yrs, and recurrence has since followed. My CA125 levels are consistently low, even at Stage 4.

Tumours can be classed as 'secretive' as they don't secrete the chemical that CA125 looks for. Therefore CT scans are also needed to track the progress of the disease.

(but neither will a benign tumour release this chemical, so unless it WAS to be a 'secretive' one you should be fine ultimately. ( fingers crossed for you. )

hope that helps put it into context.

[Sparkleshimmer in reply to MamaFrajuler]

thanks so much for your reply. Sending lots of love to you x

I really struggle to get my head round the staging part😬 so as you say stage 4 - I presume that’s like a further on stage (please excuse me - I don’t want to google - I’d rather ask those with first hand knowledge)

How is stage 4 treated and how is that diagnosed- for me it’s early days and hopefully mine will not be any I pray 🤞🏼 but just trying to get my head around the processes etc xx

Thank you for your explanation re CA125 - it’s very strange isn’t it that it fluctuates/is different for everyone x

[MamaFrajuler]

wow... firstly... Well done.. for not NOT hitting google..!!! ( I am the worlds worst,,) But yes.. every1 IS different. Staging is not difficult if you just accept that sometimes 'it just is' ! My first chemo was 'intentionally curative' - and I had responded so well I had 3 whole years clear. From the 2 1/2 scan being NED.. the next CT, 6 mnths later showed the cancer was widespread and had metastasised. It's pot luck it seems sometimes. I totally jumped past stage 3. Mine is HGSOC (High Grade Serous Ovarian Cancer)

I believe knowledge is power... but at stage 4 they dont have so many concrete answers.! there are too many variables with each patient. I personally am currently on a targeted therapy treatment, 'PARP' inhibitor, Niraparib. Again it is a waiting game and CT scan that will reveal if it is doing it's job.

[Sparkleshimmer in reply to MamaFrajuler]

Thank you so much for your reply, that has really helped x

I hope your treatment therapy works the way it should and that when you have your CT scan you get the result you wish for ❤️xx

Thanks again for explaining so well and I wish you well - sending love and positivity xxx

[MamaFrajuler]

thanking you kindly.. Ultimately I would just say this, please don’t worry, at least until the medics give you something definite to worry ABOUT..! Worry is such an unnecessary drain of energy, there’s just too much positivity to consider first.

All the best.. take care 🤗🤞