Questions about CA-125 test

mimi98

I will be starting radiation soon. I was diagnosed with endometrial adenocarcinoma. I asked my doctor yesterday if I had a CA-125 test before or after my hysterectomy. I only asked because I see that test mentioned so frequently in everyone's posts. The doctor told me that test was for ovarian cancer and that I haven't had that test done nor would I be getting it done. Instead, I will be getting CT scans for monitoring purposes. It seems that most of you ladies are getting the CA-125 test even with endometrial cancer so I'm not sure why he would tell me that it's for ovarian cancer. Even a Google search says otherwise. Has anyone else been told that they don't need the CA-125 test? I'm trying to understand why I won't be getting this test done.

BluebirdOne

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

cmb

My CA-125 was 18 before the surgery that showed I had a Stage 3B, Grade 3 cancer. After treatment ended it was down to 9, and has floated between 7-9 since. Even though it wasn't a marker for me, my doctor still tests it every couple of years.

But we've also seen the women posting here with a variety of uterine cancer types have elevated levels of CA-125. And it has been helpful for them to spot a potential recurrence. So it isn't confined to just those with ovarian cancer. I'd push for at least one test as a baseline.

Tamlen

https://csn.cancer.org/discussion/324796/questions-about-ca-125-test

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.

woodstock99

I was stage 1B grade 3 and my CA125 was 21.9 at diagnosis last May and has been 12.9 on 2 subsequent tests. Technically it was in "normal" range at diagnosis and still is but as long as it is below where I started and stays there I am good. I don't recall specifically discussing the test's validity at the time and I did it around the time I had my first cat scans and based on replies everyone's numbers are all over the range but just came across this that may provide some better info.

woodstock99

https://csn.cancer.org/discussion/comment/1693906#Comment_1693906

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

Lyn70

https://csn.cancer.org/discussion/324796/questions-about-ca-125-test

I am 6 months post treatment for Stage IIIA endometrial adenocarcinoma and I never had a CA125 blood test. I do receive monitoring CT scans every 6 months so far. I had a PET scan after chemo and before starting radiation.

I asked both my GYN Oncologist and his PA about the test after seeing it in many posts on this site. Both replied the test was not warranted 'in my case'. I have a note for my March 30th checkup to ask why it is not warranted.

I will report back in after the checkup.

thatblondegirl

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

Lyn70

Thanks, Alicia.

I was going to bring up the point about cost, thinking maybe the CA-125 was super expensive and insurance would not approve. Good to hear your input on the cost factor and the time required versus a CT and side effects. I shall add those talking points to my question to ONC.

SpringerSpanielMom

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.

SpringerSpanielMom

Instead I got my tumor assayed and got a bespoke personalized blood test based off my tumor that will detect tiny traces of my cancer in my blood, the hope is long before a CT, PET, or MRI, or God forbid, "symptoms".

woodstock99

https://csn.cancer.org/discussion/comment/1694403#Comment_1694403

Why was the assay and blood tests called? Thanks.

SpringerSpanielMom

It's also called functional profiling. Mine was done by Natera. Another more familiar group many use is Foundation One, though I'm not sure if Foundation is doing the bespoke blood tests. They assay your tumor and map out its characteristics. You can also find if you and separately, your tumor, have any genes like BRCA 1 or 2, or Lynch, which would help your decisions (do more prophylactically, think Angelina Jolie) and your family to know their risks. Next, they create this personalized blood test that checks your blood for tiny traces of cancer, of your exact cancer as it's mapped out. It's early days, but the hope is that these tests will become routine and will detect recurrences long before they show up on ct, PET, or MRI scans, or heaven forbid, present as symptoms. Here is the language Signatera uses: "About this test: Signatera is a bespoke mPCR-NGS assay for detection of circulating tumor DNA (ct-DNA) in the plasma of patients previously diagnosed with cancer. Individual-specific mutation signatures are identified by up front tissue and matched normal whole exome sequencing". (Some of that is still above my pay grade.)  Your surgeon obtains a sample kit before surgery, makes sure the fresh sample is prepared properly, and has it shipped immediately to the lab. Functional profiling can be expensive (I've heard $2500-5000) and but is often covered by insurance for recurrences, less so for frontline testing. My frontline testing was free under a program Natera offered because they are new. If you don't get it done in time for your big surgery, you may have more opportunities with recurrences.

Forherself

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.

cmb

While my CA125 has never been a cancer marker for me so far, I always remember a woman with my type of cancer who was a very engaged participant on this board a few years before I joined. Her first indication that she had recurred after four years NED was an increase in her CA125. Unfortunately, she lost her life to her recurrence. So even though my CA125 has always been in the normal range and went down even further after treatment, I'm still in favor of having it checked every couple of years as my doctor does. It's an easy test done in my doctor's office and doesn't cost me anything.

Lyn70

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.

SpringerSpanielMom

https://csn.cancer.org/discussion/comment/1693679#Comment_1693679

You said, "Our new website design does us no favors in trying to keep track of everyone"--I could not agree more!!! I am so happy it was the old format when I first needed it. Otherwise, I would never have found the comments re icing, tumor assay, etc. Of course, CMB's organizational posts still help a huge amount.

cmb

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.