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CA125 Question

hopeful girl 1
Posts: 454
Joined: May 2010

What is a good CA125 number?

Does the CA125 ever go to zero, or does everyone have some kind of number, preferably, very low?

Thank you and peace and healing to all!

kumar
Posts: 109
Joined: Aug 2009

My mother had 6 only

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I believe that anything under 30 is considered OK. I'm perplexed by this marker for me. My gyn-onc told me that CA125 is only reliable when HIGH - which means low numbers are not necessarily signs of no problems - so I try to be happy when numbers are low but still have nagging doubts about this.

However my experience has been, when mine rises there is a problem. I recently had a rise - only to 41 - which coincided with a positive PET scan confirming recurrence of my UPSC.

For what it's worth, For the last 4-5 months I have been routinely tested for HE4 - another ovarian marker - along with CA125. Don't really know if this gives more info but my doc is happy to order this too.

Good luck with everything. Mary Ann

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

I made mention of this somewhere else as your comments on HE-4 were very puzzling to me. What I said was that HE-4 is fabulous and a more reliable marker even than CA-125, so you have a very up to the minute doctor. Tell them I say congrats on the timely info.

I'm sure they'll be thrilled--NOT.

Love you sweetie,

Claudia

Here's hoping your results are what you most need to hear.

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Mine was high before tratments started 400+ and during treatments it consistenly came down to a 3 to 4 after treatments and stayed there since. My doc claims we can follow my marker as it shows how the treatments helped it and good marker. In fact he doesn't do CAT-scans but every 6 months even though I've got bloodwork and physcial every 3 months. Now if the bloodwork comes back at a higher level CA 125(not sure where) he'll then do cat-scan to see what's going on.

I've heard that with many of us it's not a good marker, as some are always high say 40-80 range and scans show no cancer.

My understanding is 30 or below is the best range, but not sure if it ever goes to 0.

kathybd
Posts: 126
Joined: Jul 2009

Mine was 160 before surgery and slowly went down with the chemo. Last 2 were 6 and 8. My Doc says he will be worried if it doubles. Hope that helps.
Best,
Kathy

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

according to my chemo doc, it's the trends she follows, not the absolute numbers. my ca 125s post chemo are all under 30, but show a slight rise last two times. if it shows another rise, even if still under 30, probably will have another ct/pet scan. if no rise, or lower next time, then no ct scan. so, it's definitely not absolute numbers for me. at it's height prior to surgery, ca 125 was 191, which i was told was "slightly elevated." then went down to ll, 18, 21 post chemo.

hope this is helpful.
sisterhood,
maggie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Don't be so quick to credit my doc for the HE4!. He has been ordering because of my request. I saw this info awhile back and posted about it too.

I wonder why our docs are not starting to check the HE4 - seems they are so stuck on the CA125. Hmmmm -

Mary Ann

kathybd
Posts: 126
Joined: Jul 2009

Mary Ann I am going to ask my Doc to order it. Seems the more info we have, the more in control we/I feel. I continue to try to stay in the moment, but cancer fears keep getting in the way!
kathy

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i'm definitely also going to request this marker instead of, or in addition to the ca 125. why not? doctors really do get stuck in their ways, and are slow to try innovative things. we do have to push. glad you've done that, mary ann. sounds like you've really tamed your doctor!!
sisterhood,
maggie

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

it is a good idea for anyone who would like to have some test or whatever done by their doctor to print out, highlight and bring in to their doctor's office the paper that made you feel this would be a good idea or is the standard elsewhere. i always ask them to leave a copy in the file. i think if there is a copy of say something like the HE-4 documentaion on the studies that were done and they still won't do it, you could ask-simply what their reasoning. There may be things they know that we don't. (like that's ever going to happen--just sorta kidding) maybe they could use the studies to convince the insurance companies that they should change their current standard of practice.

i don't know, anyone else got any ideas?????????

Claudia

kathybd
Posts: 126
Joined: Jul 2009

I am going to do just that; although my Doc is pretty good about really listening to my concerns. Just wish medical wasn't so expensive..even with insurance and a huge deductible that's been met!
Best,
Kathy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

When I first requested the HE4 and the HK6 (which is unavailable) my doc's response was "there's no science to support that". So I emailed copies of studies that talked of this and viola! he got cooperative with the idea and has been ordering ever since.

Goes to show that we can impact the medical professionals is maybe even a slight way. And we need to be -and continue to be-our best and fiercest advocates.

Mary Ann

kathybd
Posts: 126
Joined: Jul 2009

Had a ct with and without contrast last week and the results showed increase in the size and numberof lymph nodes in the mesenteric area, but were not patholigic, according to the radiatiologist. Followup reccomended. My Doc was going to repeat in a year, but changed his mind to 6 months. Was ok with that at first, the got concerned it was a precursor to metastatis. Wrote him an email and he said we could get a Pet scan for more info, but it wouldn't change treatment much. I was all set to do it, then realized I was probably overeacting, and didn't want to overdue radiation. left decision up to him and we are rechecking in 3 months with my next pap.
Has this happened to anyone else; and what was the out come? I am Stage 1iiB grade 2-3. All paps normal,mammogram normal, 1st Ct normal, ca-125 was 4,5 6, and now 8.

Would love some input, but just realize I didn't start a new thread! Too tired to change it.

Thank to all of you for keeping me sane through this maze!
Hugs,
Kathy

Blondeandblue
Posts: 4
Joined: Dec 2009

After dx, you can not rely on the ca-125 level to test for recurrance.  IT IS NOT RELIABLE.  We had 12-18 result for 5 years and now it has recurred.  IT IS NOT RELIABLE.  Do not live by this number.  Get a CT Scan/PET scan.  Even if it has not returned after a few years.  Get your scan.  Push for it.

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

So sorry to learn of your recurrence. My oncologist took a CA-125 before surgery, and it came back 9.9. He said taking another would have no value as I had a normal reading while having a significant tumor (which was removed) so the CA-125 is not a good indicator for me. He also does not do routine scans unless there is a finding to check out. I did have a pre-surgery scan and amother one afterwards to serve as a new baseline. I was diagnosed with UPSC, but am currently NED post 6 months treatment.

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Sounds very similar to what my oncologist advises. I had CA 125 when I was first diagnosed (at the major cancer center I initially went to) and it was low. The oncologist I've seen over the course of treatment and now followup says it's not reliable. Also does not believe 3-month scans are necessary (only when there is an indicator for further study).

 

Anita22
Posts: 1
Joined: Mar 2017

Thanks everyone for sharing the details

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