CA125 variations: Reading peoples posts its so... - My Ovacome

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CA125 variations

rosebine profile image
21 Replies

Reading peoples posts its so weird that some people have CA125 numbers in the thousands and some in the hundreds on diagnosis or start of treatment. I started at 750 but with stage 3C disease and people with a lesser stage have numbers in the thousands .

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rosebine profile image
rosebine
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21 Replies
Cropcrop profile image
Cropcrop

It is a bit bizarre isn’t it? My CA125 was never higher than 69 stage, even at diagnosis of 1C3 clear cell, I have a friend who was stage 4 and her CA is now lower than mine, I was really symptomatic and she wasn’t particularly symptomatic other than feeling ‘off colour’. I think it just goes to prove we’re all different and one size certainly does not fit all. I guess it’s one of the many factors that explain why our diagnosis can be difficult for the medics to arrive at. I hope your CA is now reduced and that you’re doing well, stay safe ❤️Xx Jane

Caleda4 profile image
Caleda4

I agree with you totally,it is very strange. I had womb cancer which was stage q.v. and serous high grade in 1 fallopian tube. When I had completed the 4 rounds of carbo/taxol I had 4.5 years with no treatment. Recently I learnt that when I finished that treatment my ca125 stood at 400 which was a complete surprise. In March this year I had my 1st recurrence of the fallopian type which is now stage 4 of course as it is covering my Omentum . At that time before further treatment my ca125 was 532. Fortunately now after carbo gem the ca125 has gone down to 29 which is really strange. I know other things can affect these numbers,but weird, Caleda

LesleyGB profile image
LesleyGB

Yes it is odd! I have read on here of ladies with CA125 of 5,000 +. I was diagnosed at 593 with stage 3 which reduced after 3 chemos to 25, now 16. My sister had a scan and bloodtests for vague abdominal pains due to my history. All normal thank goodness and a polyp diagnosed but the doctor said that CA125 sometimes doesn't rise with ovarian cancer anyway. I am just glad that the medics understand it all because it us very confusing to me! Keep well. Lesley x

Spirit22 profile image
Spirit22

Yes I have wondered about that 🤔 I was 1,490 prior to surgery and immediately after dropped to 9 and was staged at 2A low grade xx

win_56 profile image
win_56

Yes my oncologist said my CA125 bloods results tell her nothing. I was diagnosed 2018 September High Grade Serous stage 3C and it was only 250. First recurrence in March it was only 3 4!!! My CA125 not a good indicator for me

Gemimablackvelvet profile image
Gemimablackvelvet in reply to win_56

About the same as me then Win.

Difficult!

Love Angela xx

Tulips66 profile image
Tulips66

Hi rosebine, yes it is strange alright & because everyone's ca 125 is so different unfortunately it can't be used on its own to diagnose ovarian cancer, it would be great if it could & so many of us wouldn't be diagnosed at stage 3 or 4. Like you I had high grade 3c serous ovarian cancer with no symptoms until 2 weeks beforehand & when diagnosed my ca 125 was 2,246 & is now steady. Hopefully someday soon they will find a way to screen women for this dreadful disease. Take care & stay well 🌸 X

koza21 profile image
koza21 in reply to Tulips66

I was diagnosed as stage 4 advanced and my ca125 has never gone above 12 !!!!

Tulips66 profile image
Tulips66 in reply to koza21

I don't think my ca125 will ever be that low ! Hope you were able to have treatment & are keeping well 🌸 X

Gemimablackvelvet profile image
Gemimablackvelvet in reply to koza21

Really !! That’s very unusual. Love from

Angela x

koza21 profile image
koza21

Hi what i should have said in my previous post was that my ca125 was only 18 when I was diagnosed stage 4 as I am having blood tests tomorrow so no idea what it is now!! Don’t want to tempt fate ! Hugs to all xx

Di16 profile image
Di16

My ca125 is never high. I have been dealing with my latest recurrence for 3 years now, & have several tumours, & my latest ca125 is only 8! It did go up to a 'high' of 15 just after my last operation at the beginning of 2017. Di

March2017 profile image
March2017 in reply to Di16

Same

ZenaJ profile image
ZenaJ

I was stage 3C and my CA125 was 135. Quite low really. xx

bluepeterella profile image
bluepeterella

Mine was 935 I think at diagnosis. At first recurrence it went from normal range to 63, then 126 and then 230 in quite a short space of time, so I guess would have continued doubling if left unchecked.

Now I am panicking because it has climbed to 25 from 17, so I am trying to get my head around the possibility it could be on the move again.

Mommoo65 profile image
Mommoo65

Hi Rosebine. My CA125 was 45 at diagnoses of 3b Fallopian Tube cancer. Chemo brought it down to 6 and it stayed there for 5 years when it rose to 85! That signalled a recurrence to an inguinal mode. My doc basically said my CA235 was obviously not a good marker for me. But, yes, it shocks me to hear of numbers in the thousands!!

Melnie profile image
Melnie

Oh dear I read it was not a true indication of ovarian cancer but if we can't rely on it how do we know to keep ay eye on us after my treatment I've been 24 for the last 8 months but now it's gone up to 39 so i feel that my cancer is on the move again.... are we saying this is not the case? but how can we be sure?

HJF123 profile image
HJF123

Indeed the C125 numbers are interesting. I have stage 3c cancer but my C125 was only 20? My nephew didn't show any tumour markers with Hodgkin Lymphoma, by the time the doctors decided to listen to him and carried out a CT scan, it was too late. Are we putting too much store into these blood test?

Ruebacelle profile image
Ruebacelle

My highest was 278 before surgery. Stage 3c 3 tumors...Since it has ranged from 4 to 9. in my 6th year and except for 1 year remission have had cancer the whole time. Rely more on ct snd pet scans and how i feel day to day which so fsr is fine 5 lunes 60 infusions 6 operations

rosebine profile image
rosebine

Ruebacells, you have really been through it havent you . You must have a strong constitution !

Iside profile image
Iside

Mine is CA 123 & have been told OC is on the move again!!! Back on chemo for 18 weeks on Paclitaxel.

This is the 2nd reoccurrence, will it ever go away forever!

Anyone else on this regime?

Regards,

Iside

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