CA125 Question

Low
My mother had 6 only

CA 125
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 said:

CA-125
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

ca 125 trends

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

maggie_wilson said:

ca 125 trends

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

Claudia,
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

daisy366 said:

Claudia,
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

thank you, maryann, for he4 tip

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 said:

mary Ann
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

Great idea, Claudua!
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 said:

you reminded me, Claudia
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

I'm with you, Mary Ann...My Last CT..........CONCERNING to me!
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 said:

Not Reliable

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.

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.

Hopeful162 said:

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.

Same for mine

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).