Voices: Discovering CA-125

Discovering CA-125 | Dee Sparacio

I didn’t even know CA-125 existed until I was diagnosed with Stage 3 ovarian cancer. CA-125 is a “tumor-associated protein” for ovarian cancer. It is found in the blood. Before surgery my CA-125 level was in the high 100’s (below 35 is considered normal). I learned from other women diagnosed with ovarian cancer that their numbers were in the 1000’s when they were initially diagnosed.

After surgery my CA-125 was in the low hundreds. After my first chemotherapy treatment the result had dropped to 34. My gynecologic oncologist was hoping my CA-125 level would end up in the single digits. I looked forward to hearing my test results during treatment. My CA-125 continued to drop. I went so far as to plot my results on an Excel chart. I was hooked on following my CA-125 and was thrilled as I watching the line slope downward and level out between 9 and 10.

But it wasn’t until I was done with treatment and on a follow-up plan that I realized how much power this test result had over me. It had the power to make me worry and was the cause of many anxious days.  On follow-up visits, the first question out of my mouth would be “What is my CA-125?” It crept up a bit to 11. Oh no! It is in double digits! I worried my cancer had recurred.  I felt fine and my scans were clear, so I had not recurred. The number started to move up to 15 in the spring. Could it be allergies? We retested and it moved down to 13.

In the fall of 2008 (two and a half years after finishing treatment) it came time for a follow-up CT scan and CA-125. The CA-125 came back at 16. It was up a tiny bit but still normal. I was feeling good so I wasn’t too worried. But this time the scan showed I had recurred on my liver and spleen. A value of 15 and I am fine but a value of 16 and I have a recurrence?

That is when I decided to learn more about CA-125. I read a number of journal articles and found the booklet published by the Foundation for Women’s Cancer Understanding CA-125 Levels- A Guide for Ovarian Cancer Patients (http://www.foundationforwomenscancer.org/wp-content/uploads/CA125levels.pdf) to be very helpful. The test is not a perfect one. There are a number of different reasons why a woman’s CA-125 could be elevated. Some women have disease with low CA-125 levels, some have disease with high levels and other conditions that cause inflammation in the abdomen can also cause a high CA-125.

Doctors are now following upward trends in a women’s CA-125 level even if those levels are in the normal range. One line in the booklet stood out for me.  “We urge women diagnosed with ovarian cancer to try to keep in mind that the CA-125 test is only one indication of how well the treatment is working.”   My gynecologic oncologist continues to use the CA-125 as one of a number of tools she uses to assess my health. Do I still ask for my CA-125 results? Yes, but only after I have chatted with her about my exam and scan results. We look at the whole picture.


Every Day is a Blessing!