Initial ca125 levels

Was just wondering what folks ca125 level was at the initial test,you know the first time when you go to your go saying I've these odd symptoms ect ect ..what if you can remember was the number.Just curious as to how high it has to be to indicate actual cancerous changes or if theyres actually no pattern and any raise however small can mean theyres something serious wrong.

[Janet235]

The CA 125 test ( normal range 1-35 ) generally seems to have no explainable consistent correlation between the score and disease, going on the widely differing numbers women have on this forum

Mine was in mid 3000's to start but my symptoms only really started 3 months prior. Within two weeks I was diagnosed at stage 4. So yes there was definitely something related there. I have never come lower than 200 at the best of any treatment and I just dread to think what it is now!

Don't focus on this aspect so much, think about all your symptoms, date and document them, for the doctors

All the best

Janet 🌈

[Manchesterlady]

Hi polly

The dreaded ca125. Mine was 700 on diagnosis. Came down to 35 before surgery and after 3 lots of chemo. Rose to 135 after surgery then back down to 20 after next session of chemo . Still have one more treatment to go so hopefully it hasn’t gon up again.

Good luck xx

[Welshandproud]

9600 at diagnosis then went up to 10400 after my first chemo. Down to 23 now 18 months after finishing chemo. I have 3c. Although I try not to be too hung up on the numbers I do know that my body registers disease in high numbers and I think that a significant rise would mean 5hat the bugger was back. I hope that helps. Sianx

[izzybruce]

Mine was four,so not a good indicator

[Katmal-UK]

Hi I don't believe there is a pattern. Mine has never been particularly high. 389 on diagnosis. No symptoms. On recurrence it's been 65. For me its a good indicator even though it never goes in to the 000's like other ladies. Currently mine is below 3. Kathy xx

[Lindaura]

Mine was 1800 at diagnosis and I had only experienced symptoms 10 days prior to that, but really bad symptoms leaving me bedridden.

Went up to 4000 before treatment and down to 9 after treatment.

Stayed down for 5 months, but just rose to 69 in September and now 101 and I am having a scan this Sunday and expecting to start treatment again.

I was 3C high grade serous, BRCA1 positive, so hope to go on Olaparib after successful treatment.

Good luck to you and your testing.

All will be what it needs to be, and if your needs aren’t met, get yourself to a difficult hospital.

Best wishes,

Laura

[Lily-Anne]

My CA125 was first taken before surgery. My gynae believed it to be a simple cyst and not sinister so when I had my pre-op bloods the week before surgery they added it. The result was normal so just confirmed their diagnosis. Unfortunately they were wrong

LA xx

[January-2016-UK]

Mine was initially 1250. Stage IIIC, high-grade ovarian carcino-sarcoma. It then rose rapidly until treatment started. Mine tends to slowly rise following successful treatment and then fall again once treatment is started. Lowest was 35 after first line and op.

There doesn't appear to be a direct correlation with the amount of disease (presumably some is hidden from the CT-scan) but it is still a good indication that things are moving again.

[Malpam99]

Mine was " surprisingly only 14" as stated by the A&E doctor.

[Neona]

16 when first tested and only 67 when diagnosed stage 3c clear cell.

[Hidden]

Mine was mid 3000s and had symptoms for more than a year prior to diagnosis. CA125 is a very accurate indicator for me.

[Maus123]

Over 4500 . Made me gulp. These days, it's mostly sitting around 100. All the best, Maus.

[ellseybellsey]

Mine was 790 at dx, down to 13 post treatment, now going through first reoccurrence and has never moved from 13 even with symptoms.

Oncologist says ca125 now an unreliable marker for me.

Ellsey xx

[Numi]

Hi - mine was 149 the first time, in December 2015, but some months later, in March 2016 after surgery and as I was about to start chemo, it was 900. It went down to 50 with chemo and stayed around there for a few months. In February 2017 it had gone up to 200. The only symptoms I'd had were 3 or 4 unexplained bouts of sickness, but my oncologist booked me a CT scan which showed a measurable tumour. Further chemo brought it back down to 50. I then went on to Niraparib, which I've been taking for a year as of yesterday. My CA125 decreased and got down to 19.8 in the summer, and since then has fluctuated between 20 and 22. I've had bowel issues, which made me worry things weren't going well, but my oncologist feels that CA125 is a good indicator for me, though she is booking me a CT scan for reassurance as I haven't had one since February, which showed the tumour was barely visible. I have 3C high grade serous, with BRCA2 mutation.

[transf2856]

Hi am stage 4 serous advanced and my CA125 has never been higher than 18 so not a good indicator for me.

[Hopefulgal1]

Hi I have a ‘low” CA125 naturally. I now know that when told it’s now in the normal range that can be an irritating comment to me as I know I seem to be better once it is down at 4 or 5 - as 19 has actually been full of OC : some people I know have been up in the 1000’s ! Really it is individual I am just realizing this as am on my 4th ‘recurrance’

Good luck - really hope you are clear as a bell! X

[Kmastro]

I started at 9000. Stage 4 HGS. It dropped to 5 after front line treatment which I finished in March . It is now 6.

[Hidden]

No hard fast rule then reading you're experiences.

[Travelmonster]

Hi, my CA125 was 1750 when first tested, which rose to 2380 by the time I had my debulking op. It dropped to 151 after the op.

xxxx

[Iwillbeatit]

Hi Polly mine was 135 on diagnosis not as high as some went up to 190 after first chemo 103 after 2nd and 32 after 3rd. I have stage 4 ovarian cancer also on liver spleen diaphragm and in lymph nodes. Told this week. Cancer not gone down enough to have debulking surgery got to have 3 more chemo and read an at Christmas. Disappointing as CA125 level gone down. As everyone's vary you just need to watch your own. During your treatment. Good luck its a rollercoaster journey.

[Eriksendi]

1261 at diagnosis down to 11 after surgery and chemo. Went up to 29 the other month but I had constipation and bowel issues. Has dropped back to 11 now. Seems a good indicator for me currently.

[Superkim]

Everyone is very different and the CA125 level are subjective depending on the person. My CA125 was at 24 when I was diagnosed with 3C. But it gave me a baseline. When I was in remission, it was around 5. The highest was around 200 for me, but I know women with numbers in the thousands. You just can't use that number alone.

Sincerely,

Kim