Do you get CA-125 test as part of your follow-up appointments?

The ca125 test just says there’s something wrong in the abdomen. It’s not specific to cancer, so don’t freak if it’s high - it could just be a UTI.
My oncologist keeps getting my ca125 tested, but I have had recurrent ovarian cancer for so long that the ca125 no longer responds to it. It’s been “normal” while I’ve had the disease for about 7 years!

Yes, ca125 is included in blood tests, along with ca 15-3 and 19-9. I have serous cell endometrial cancer 3C2.

@scrappy1006 Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group.

Here is some information from Mayo Clinic about the C125 blood test:

CA125 Test:

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

In my case I have asked my oncologist and providers any questions that occur to me. I write these questions on paper so I can keep track of my questions and don't forget them before my appointment. I've learned that these blood tests are useful but the numbers (results) can be variable. For this reason, if a provider orders these blood tests these will be one of a series of tests that are ordered including CT or PET scans or other blood tests. The blood tests alone such as CA125 are not predictive of cancer - the other tests are needed to give the provider the full picture.

I'd recommend that you talk with your oncologist about the CA125 test. Are you currently in treatment with radiation, chemotherapy, immunotherapy? When is your next appointment with your oncologist?

I would request it simply because it's one tool in the toolbox and we need them all. However, although there is a universally accepted normal range, the value is most useful when it's evaluated against what is normal for you specifically. Mine was 6 before any treatment. It's 3 today. My doctor said 10 would be bad for me, yet it falls within normal. In your case, you wont be able to compare the number you get today with what it was prior to treatment which is unfortunate, but it may prove useful moving forward with future comparisons.

I think most people with HGSC have their CA125 levels tested regularly. Once you establish a baseline, they checked to see if it is increasing and worry if your baseline doubles. Some people get very high CA 125 when they develop cancer (over 1,000), and others like me get an increase, but it never goes very high (my highest number was under 65). If treatment is successful, it can drop to normal levels (under 35 usually), and that will give you a heads up if it starts increasing. I have other health issues, so at its lowest my CA125 was just under 20, although I had no visible evidence of disease, but other people report very low CA125 levels (like Jenelle) once treatme t is done. It is not a good prognosticator for everyone, but it works for many of us and is certainly one more tool in your arsenal. There is a newer test that checks for microscopic disease as well—but I don’t think it works for visible disease. It is called a Signatera test. You can read about it on the company’s website. It is meant to alert us to an early return of our cancers. Ask your doctor about these tests and see if he or she has a reason for not including them.