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

Posted by stparker54 @stparker54, Aug 26, 2020

The results of my CA-125 tumor marker test increased from 16.8 to 20.3. This is the fourth time I've had a tumor marker test and it's the first time there was an increase in the results. How concerned should I be?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Profile picture for Helen, Volunteer Mentor @naturegirl5

@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?

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Figo 1 - stage 1

I have a follow up 1 time a year.

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Profile picture for mab3461 @mab3461

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?

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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.

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Profile picture for mab3461 @mab3461

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?

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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.

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Profile picture for mab3461 @mab3461

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?

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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.

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Profile picture for mab3461 @mab3461

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?

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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/

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Did anyone test high for CA125, with elevated value of over 800?I have a big abdominal mass arising most likely from the right ovary, and a cyst with abnormal enhancing soft tissue involving the left adnexa. Surgery in 2 weeks. I have no pain, bleeding or other symptoms accept a tight abdomen from the mass. The doctor says the CA125 test is not a reliable indication for cancer.

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Profile picture for charlotte12 @charlotte12

Did anyone test high for CA125, with elevated value of over 800?I have a big abdominal mass arising most likely from the right ovary, and a cyst with abnormal enhancing soft tissue involving the left adnexa. Surgery in 2 weeks. I have no pain, bleeding or other symptoms accept a tight abdomen from the mass. The doctor says the CA125 test is not a reliable indication for cancer.

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@charlotte12 This must be very frightening for you however it's good that your surgery will happen so soon. Two weeks may seem like a long time to wait.

Did you have CT or MRI? Ultrasound? If yes for one of these what did the radiologist report?

I'm confused by the heading of your discussion as you wrote "Did anyone test high for CA125, with elevated value over 800? Your doctor said that the CA125 is not reliable for a cancer diagnostic so I'm wonder if that number is the value that was computed from. your CA125? It's difficult to accept, I know, but some tests are not very reliable. Here is what Mayo Clinic has about the CA125:

-- https://www.mayoclinic.org/tests-procedures/ca-125-test/about/pac-20393295

Did your doctor suggest what the mass might be? How are you feeling?

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Profile picture for charlotte12 @charlotte12

Did anyone test high for CA125, with elevated value of over 800?I have a big abdominal mass arising most likely from the right ovary, and a cyst with abnormal enhancing soft tissue involving the left adnexa. Surgery in 2 weeks. I have no pain, bleeding or other symptoms accept a tight abdomen from the mass. The doctor says the CA125 test is not a reliable indication for cancer.

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I read your other post mentioning the possibility of a uterine fibroid. There are definitely reports in the literature of very high CA125 levels (500-1000) in some women with large fibroids. But women with ovarian cancer also often do have levels that high or higher.

The problem with CA125 as a test for ovarian cancer is that there are both false positives (high CA125 but no cancer) and false negatives (cancer but no high CA125). So you don't know what is in there until they take it out and look at it.

Waiting to find out what's going on is the worst. I have my fingers crossed for you.

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@charlotte12 This must be very frightening for you however it's good that your surgery will happen so soon. Two weeks may seem like a long time to wait.

Did you have CT or MRI? Ultrasound? If yes for one of these what did the radiologist report?

I'm confused by the heading of your discussion as you wrote "Did anyone test high for CA125, with elevated value over 800? Your doctor said that the CA125 is not reliable for a cancer diagnostic so I'm wonder if that number is the value that was computed from. your CA125? It's difficult to accept, I know, but some tests are not very reliable. Here is what Mayo Clinic has about the CA125:

-- https://www.mayoclinic.org/tests-procedures/ca-125-test/about/pac-20393295

Did your doctor suggest what the mass might be? How are you feeling?

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I first had an ultrasound, then an MRI. I hope I can keep the second surgery day, I'm still coughing too much, with greenish phlegm. In short the MRI shows a large, mixed, cystic/ solid mass
(about 12 x 12x15 cm) arising from the pelvis. The mass abuts the dorsal, distal uterine body/fundus and also involves the left adnexa which contains an oval cyst. The normal range for C125
is between 0- 30, mine is at 872. The doctor does not know what the mass is about or did
not want to speculate, till he can take a biopsy during surgery. I wished I did not have the cold,
my second week. I need to recover from it before the surgery.

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Profile picture for val64 @val64

I read your other post mentioning the possibility of a uterine fibroid. There are definitely reports in the literature of very high CA125 levels (500-1000) in some women with large fibroids. But women with ovarian cancer also often do have levels that high or higher.

The problem with CA125 as a test for ovarian cancer is that there are both false positives (high CA125 but no cancer) and false negatives (cancer but no high CA125). So you don't know what is in there until they take it out and look at it.

Waiting to find out what's going on is the worst. I have my fingers crossed for you.

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Thank you for your reply. I'm eager to get the hysterectomy and the fibroid removed. I can
feel the mass is pushing against my abdomen.

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