Questions about CA-125 test

Hi mimi98,

I am sorry that I do not know your stage or grade and I assume you have endometrioid adenocarcinoma? (Our new website design does us no favors in trying to keep track of everyone)

I had 1a, serous, treated with surgery, brachy, and chemo, 3 1/2 years NED, no recurrences. My CA125 was 18 at the time of dx, went down to 7ish after treatment and never went up. It would make sense for my numbers to be low because I had no active cancer, but also had a normal reading while I did have stage 1a cancer. So for me, it was not a good marker, but maybe because I was 1a and never recurred, there wasn't enough cancer to give higher readings. My docs discontinued the test for me after 3 years. I think that the CA125 can be very high with people who have advanced endometrial cancers, anecdotally, but not everyone. On the other hand, again, also anecdotally, IIRC, most women here have had at least one done, maybe others can chime in. I would think that your doctor would want to have one CA125 baseline done just to see what it is. Your doctor's attitude seems a bit dismissive, which would give me pause, the CA125 test is very inexpensive and would give you a baseline. I had all my treatment at Mayo, so I assume I had a pretty good standard of care.

My doctors, after initial treatment and surveillance, do not give routine CT scans due to the high radiation risk. So in my case, I had a CT scan pre-dx, one done just as I was finishing treatment, and one done at 6 months after treatment ended. I had another scan due to pain issues I was having, two years after treatment ended. My treatment plan was developed for me, a 1a serous, and I would assume would be very different for someone with a higher stage or someone who had recurred immediately. Good luck to you and keep us informed!

Denise

I think oncologists use the CA-125 for endometrial because for some women it turns out to be a helpful marker. For others of us, not so much. My CA-125 was 8 at the time it was first done while I was getting chemo, never went over 8, and has been under 2 for three years now.

Not sure why the link doesn't show: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6354887/

Hi,

Yes, technically it’s said to be for detection of ovarian cancer, but I think most of us here get it. And it’s an indicator for some and not for others. But you won’t know unless you get it! And as has been discussed on this board very recently, regardless of the actual number, what they look for is steady.

It’s just my opinion, but the CA125 is a simple blood test and since you’re there getting blood drawn anyway, and has no side-effects, why not add it? As opposed to a CT which exposes you to radiation and takes most of a morning to accomplish! Not to mention the CA is a cheap test….I’ve never had to pay for either….but I’ve heard of insurance only paying for so many CT’s per year?

My ONC monitors the CA and only would order a CT if we had some reason.

😎, Alicia

A world expert on my cancer (MMMT carcinosarcoma) also said the CA 125 is for ovarian cancer and useless for uterine cancer, especially low readings. He used to use it, but people were obsessing if it went from say 8 to 10, which is not significant at all. My local onc uses it, and mine has ranged from 8-15, so totally unhelpful. I would not stress over it, as there is plenty else to stress about.

Why was the assay and blood tests called? Thanks.

I have never had a CA125 done. My gynecologist did not think it was useful information. I always think of LadyMox who was so happy her CA125 dropped substantially, and then learned her tumor had grown so much. It does seem to work for some people, but is that just a coincidence? It is certainly not a universally useful test for endometrial cancer.

Thank you, Ladies,

Thank you to all who wrote about their personal experience and those with clinical information with regard to the CA-125 blood test. It is very enlightening. My doctor has indicated that the blood test is not indicated for endometrial cancer. His PA has told me the same thing. I thought what would be the harm in doing the test if I requested it. However, I see reliance on that number alone could be harmful as well.

Since I was just reading the latest NCCN guidelines for another question, I took a look to see its references to CA-125. I clipped the section that referenced the CA-125 for the most common form of endometrial cancer:

However, for the high-grade cancers (serous, clear cell, undifferentiated/dedifferentiated and carcinosarcoma), the Guideline states "Consider CA-125" regardless of stage.

CA-125 testing is then recommended during surveillance for all cancer types if it was initially elevated.