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CA-125 has stopped going down. It's risen slightly

zsazsa1
Posts: 322
Joined: Oct 2018

Ugh.  My CA-125 years before diagnosis, before I had cancer, was in the low single digits.  When I was diagnosed with UPSC/clear cell, in the uterus and isolated tumor cells in one sentinel node, it was about 35.  It went up after surgery, and has slowly drifted down.  After round 5 of chemo, it was about 12.  Now, after round 6, and before radiation, it was 14 (different lab).

I'm worried.  I know that a different lab could have slightly different results.  I do believe that CA-125 is a valid marker for me, because it went up with my cancer, and came down after surgery and chemo.  I had been hoping that it would continue to decrease, into the single digits.  The nurse who just gave me the result said not to worry, but I am.

I'm now about 1/5th of the way through external pelvic IMRT radiation.

Has anyone had a long period of NED with a CA-125 that didn't go down into the single digits?

takingcontrol58
Posts: 237
Joined: Jan 2016

Zsazsa1,

I was diagnosed with Stage 3b, Grade 3 endometrioid adenocarcinoma in Oct 2014.
Two months after my hysterectomy (Jan 2015) my cancer metastisized all over- liver, spleen,
vaginal cuff, nodules on spleen, outer colon, lungs, before I started my chemo.

I was completely NED by Aug 2015- and have remained NED ever since. My CA125 is 12-
it has never been lower than 12 and was 13 when I was first shown to be NED back
in Aug 2015. The important thing to know is what is normal for you- I use the CA125 when
I was first declared NED as a guide. I also have regularly been tested for HE4, which is a 
better marker for recurrence of endometrial cancer than CA125.

I wouldn't worry too much about a small change like that. I'm fast approaching my 5 year
anniversay and still NED, and CA125 has never been in single digits. At the heart of my metastasis,
my CA125 was 280. MSK never tested the marker before I started chemo so I don't know
if it was even higher.  280 was after 2 chemo infusions (Taxol/Carbo). 

Takingcontrol58

Forherself's picture
Forherself
Posts: 186
Joined: Jan 2019

LadyMox was relieved becasuse her CA 125 dropped dramatically, and yet then found out her tumor had grown.  I have never had a CA 125 done.  

 

LisaPizza's picture
LisaPizza
Posts: 214
Joined: Feb 2018

Since finishing treatment, mine has been between 9.1 and 12.0, up and down,  all at the same lab (I think). So yes :) Well, maybe not terribly long, surgery 11/17, last chemo 4/3/18. 

zsazsa1
Posts: 322
Joined: Oct 2018

Yes, I think about LadyMox too, often.  About how her CA-125 went down, while her distant met doubled in size.  So sad.

That 14 was right before I began radiation, and about 4 weeks after my last round of chemo.  I figure that radiation will cause my CA-125 to go up, because of course one would have inflammation after radiation.  I don't know if now it would be a valid marker for me, after radiation.

TakingControl's story is truly inspirational.  

Forherself's picture
Forherself
Posts: 186
Joined: Jan 2019

CA-125 random results would be right 50% of the time.   I just have read that it is not a perfect test for endometrial cancer.   And false positives can cause such anxiety.  You are doing everything you can to prevent a recurrence.   LadyMox joined the discussion board about the same time we both did.  I had a connection to her, and I was so schked to see such a mesleading result on her CA-125.    My gynecologist oncologist did not even suggest doing one.  

 

SF73
Posts: 264
Joined: Oct 2017

Zsazsa I would not worry about this at all. In October my CA125 was 11.7 at one facility (The ADVIA Centaur CA 125 II assay is based on the OC 125 and M11 antibodies available through agreement with Fujirebio Diagnostics,Inc.) and I switched to UCSF for the surveillance and only a month later my CA 125 was 14 (Performed using the Abbott Architect Chemiluminescent Microparticle Immunoassay (CMIA).)  These two techniques even have different standard ranges ( <35 U/ml and < 36 U/ml respectively) 

There are so many reasons why CA125 fluctuates. I would not worry about such small changes even if two measurements were taken using the same technologies/labs. If it is a different lab, then there is even more reason why you should not worry. 

I have not had a very long NED but only a year of NED. My CA125 numbers are in the range of 9-15. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

I am 3 years NED and my CA125 is higher now than it was when I had cancer.... It runs somewhere from 28 to 32. Not a number I pay too much attention to these days. I was told a long time ago that different labs will normally have different numbers. I hope you can get past the numbers! They can play a real head game on you. 

Love and Hugs,

Cindi

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