Cancer antigen 125 (CA125) changes

@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?

Figo 1 - stage 1

I have a follow up 1 time a year.

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.

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.

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.

Hi @mab3461, I'd like to add my welcome.
In addition to the helpful comments from @naturegirl5 and @val64, you maybe interested in these related discussions:
- Fibroids, family history of cancer and CA-125 test results
https://connect.mayoclinic.org/discussion/ca-125-test-results/
- CA-125 Results Went Up: Should I be concerned?
https://connect.mayoclinic.org/discussion/ca-125-results-rose/
I'd like to echo @val64's question. Was you recent CA-125 testing done at the same lab?

And since you have Lynch syndrome:
- Gynecologic cancer and positive for SMARCA4 gene and Lynch
https://connect.mayoclinic.org/discussion/smarca4/
- Low grade endometrial cancer, lynch syndrome, and HRT
https://connect.mayoclinic.org/discussion/low-grade-endometrial-cancer-lynch-syndrome-and-hrt/

I think all my tests were done via Labcorp but I don’t know if it’s the same one. I didn’t know that I had the test done in 2019. I found it in my records. I’m just not going to worry about it. It seems that as long as it’s under 35, I don’t have to worry.

@mab3461 Thank you for coming back and letting us know that you went back through your records and what you figured out. I hope that @val64 reassured you as she has a lot of knowledge about lab tests.

I can understand your worry as even though my. own cancer history is a low grade tumor (endometroid adenocarcinoma, FIGO Grade 1, Stage 1a) the worry is often in the back of my mind. For myself I don't try to push away the worry. I let it be there and check in with myself to notice how I'm feeling. Usually the worry has dissipated.