CA-125 Results Went Up: Should I be concerned?

I assumed that all of your CA125 tests were done at the same lab. Is that true? Also, I'm not sure whether 28 and 31 are actually different. If the 20 is from the same lab as the 28 and 31, that seems like a real difference, unless the lab has changed methodologies in the meanwhile. The reason CA125 is not followed routinely for endometrial cancers is probably that oncologists think that it leads to unnecessary worrying and testing. Your doctor may say something like that if you go to him/her with this.

To continue, another big difference between me and you is that I had a grade 3, stage 1, endometrial tumor, and that I had finished adjuvant chemo only 10 months before this. You've gone almost 5 years, and I'm guessing did not have a high grade tumor.

But still, your peace of mind is an important consideration. I wouldn't wait until August.

That's a difficult question. Before I tell my own CA125 story, let me list some caveats.

One is that the absolute numbers for CA125 tests are not necessarily comparable from lab to lab. So different labs could report a different number from the exact same specimen. Serial specimens analyzed at the same lab should be comparable.

The other has to do with a limitation of my own knowledge. I don't know to what extent CA125 levels fluctuate in women who have had a total hysterectomy + BSO, but who don't have cancer. It is known that CA125 levels fluctuate in normal women, but most of the reasons given wouldn't affect women who've had a TH-BSO. I'm not sure whether anyone else knows this either, although I think they should.

I never had a CA125 test before I thought I was probably having a recurrence (and in fact was). That's a problem for interpreting the results. My first reading was a 33 at a lab where the normal range went up to 38. My care team sent me the standard "Thank you for having your test drawn. No further action is necessary." response. But I talked the NP into ordering a CT scan (see below for how), and this showed numerous tumors in my abdomen. A month later before my first round of chemo, I had another CA125 at a different lab, and this one came in at 43, where 35 was the top of the normal range. After the first cycle of chemo, it was down to 24 (at second lab). Now, after 6-ish cycles, it's at 20, although my tumors have only partially shrunk.

So my CA125 when I was having a recurrence was in the same kind of range where yours is, but that doesn't mean that you are having a recurrence. But I think you should try to get an earlier appointment and/or try to talk them into giving you a CT scan for your peace of mind, if for no other reason.

Here's how I got my CT scan. I had just had a surveillance appointment (pelvic exam) 2 weeks before I started this, where the NP declared I was A-OK. I requested another appointment after I had done a digital self-examine of my vaginal cuff. (As soon as I had gotten off pelvic rest from my hysterectomy, I had gotten curious what was up there, so I had a good idea what it felt like.) I suspected a recurrence when I noticed what I was pretty sure was a new 2-3 mm lump under the wall of the vagina (not on the surface where recurrences normally are.). The NP said "self-exams are not a validated method to detect recurrences", but she could feel what I was talking about and ordered the CT scan. You might consider the digital self exam, although if you don't know what it should feel like, it might not be very informative.

Figo 1 - stage 1

I have a follow up 1 time a year.

@mab3461 I was diagnosed with endometrioid adenocarcinoma, FIGO Grade 1, Stage 1a in 2019. My tumor was tested for genetic mutations and it was negative for Lynch syndrome which I looked up at the time so I’m somewhat familiar. That’s a difficult one so it’s very good that you keep up on your surveillance appointments.

How often are your cancer surveillance appointments? Every 3 months? What were your oncologist’s thoughts on the CA125 values. Also, I don’t know what F1 endometrial cancer is as we are not medical professionals here on Mayo Clinic Connect. Can you explain?

I had F1 endometrial cancer in 2019. It is related to Lynch syndrome. My post operative CA125 was 20 taken about 12 months after my hysterectomy. They never tested me again. I have my last follow up in August. On my own, I had my CA125 tested last week and 3 months ago. 3 months ago my level was at 28. Last week it was at 31. Should I ask for an earlier appointment?

@ldubevna, I moved your question about rising tumor markers to this discussion:
- CA-125 Results Went Up: Should I be concerned? https://connect.mayoclinic.org/discussion/ca-125-results-rose/

If you click the link, you'll see in my reply to @stparker54 a rising CA 125 level may indicate a return or continued growth of the cancer. Please focus on the word "MAY." Inflammation can also cause a rise in CA 125.

What did you and your mom learn with follow-up? How is she doing with her colostomy?

My mom is 2 years and 3 months post total hysterectomy for endometrial cancer. This past winter she had a perforated bowel which required her to have a temporary colostomy. She is scheduled to have reversal surgery next month. Her oncologist had sent her for regular follow up blood work and a CT scan but that was delayed because she came down with COVID. She did have the blood work done in April and her tumor marker was 30. She had repeat blood work done on Monday and the result is now 61. It this an indication that the cancer is back or can this just be because of inflammation due to her colostomy surgery?

@christyhh and @1mbaldy, I encourage you to also see this related discussion:
- CA-125 Results Went Up: Should I be concerned? https://connect.mayoclinic.org/discussion/ca-125-results-rose/

Tumor markers, such as CA-125, alone are not enough information to make conclusions, but can indicate the need for further investigation. @1mbaldy, you're right that this is a reminder to keep asking questions.

Christy, did your mom have further testing? Was any explanation offered in the meantime?

Hi christyhh. I was also diagnosed with ovarian cancer when I was 76 — in fall of 2021. My CA 125 has been measured and, like your mother’s, my CA 125 values do not seem to coordinate with the amount of cancer found in my CT scans. I have been told by my oncologist that CA 125 is not always a perfectly accurate measure of the amount of my ovarian cancer. An increased CA, 125 he said, could, for example, reflect an inflammation rather than ovarian cancer growth. Nevertheless, CA, 125 is measured every time I have an infusion of chemotherapy drugs. Be sure to keep after your mother’s oncologist to get it clear what value testing for CA 125 is in guiding your her treatment. You have inspired me to ask questions again!! 🙂 Good luck. Marian