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.

Dee

Every Day is a Blessing!

 

37 thoughts on “Voices: Discovering CA-125

  1. My Ca 125 has crept up the last 2 times. It is now a 27, I had a near death of my little brother that shook me to the core. And that is when these readings happened, I was just wondering if stress in the body could do this? VERY CONCERNED and SCARED! Thank you from my ❤️for your time
    ❤️, cindy

    • My wife has got her CA 125 report as 91.70 u/ml . she has inflammation on her abdomen. last year she had undergone and ovarian surgery successfully, and biopsy report was also ok. Pleas let me know whether this is ok. and if not, what is the level of problem.

      • My wife had borderline ovarian cancer and had a hysterectomy. This was 20 years ago. Her ca-125 was stable at 8 but the last test showed a 34… does this mean something has come back ?

  2. May you be blessed with complete health amen… my ca 125 value is 10.90 IU/ml …is it normal? I am 32 years old and unmarried.

  3. I was just told that I have a mass…. just had the CA-125 drawn today… I’m so nervous. Measurements in the ovarie are 2cm. I freaking!

  4. My CA 125 was 44 and at age of 45, I had stage 2C ovarian and uterine CA. Now at 56, my CA-125 shot up from 4.3 to 14.5. I’m scared as my doctor told me we should look further if it got above 10, but hopeful that it has not come back and I am going for a second test as all my other blood work came back exceptionally good. The pamphlet is good to read as it shows that this test is not conclusive, but only one tool the doctors use to determine what to do next.

    • Hi, just got my Ca 125 result back with 41 level. I am very upset but will talk with my Dr. On Monday about my next step.
      My GP told me that it was a borderline positive result.
      I see the you had your level at 44. If don’t mind me asking what did your ultrasound was like?
      Ira

    • I am just curious how further testing went on you because I recently received an elevated CA 125 at the age of 45. It was 47 I think somewhere around there. I have a mammogram scheduled and a pelvic ultrasound next week.
      I hope you are well.

  5. The “normal” range for this test goes from zero up to 35. Anything above that you need additional testing. However, that number is pretty meaningless. Mine has never gone above 11 and I have stage 4 endo cancer.

  6. My Mother had gone for hystercetomy surgery last month ,After H/P it Is Granulosa cell tumour of ovary,no malignancy is seen ,but Ca125 serum level is 35.40 ,Normal value is 35 ,is there any thing new need to worry

  7. I can understand the stress you feel when you see an elevated CA125 . I am 41 years old and I have been diagnosed with Stage III C ovarian cancer, when I was 40. When I was diagnosed with the illness my CA 125 was 1220. But my doctor suggested that elevated CA 125 alone can’t predict presence or absence of cancer cells in my body. I also had other symptoms like felt full fast and stomach grew bigger in weeks.

  8. So i had surgery 3 weeks ago. Colon mass was removed and biopsied cancet stg 2
    They got it all.
    My question is
    My result for ca 125 is in the low 80s
    In addition i. Did have a total hysterectomy 14 years ago.
    Please help!!!

  9. How can we get the word out for every woman over 35 years to take the CA125 blood test as we do the yearly pap smear? This simple, low cost test would definitely save many lives and is a true cancer marker with any female reproductive issues. Maybe time to stop the yearly Pap smear test and replace with the CA125 blood test and start saving women’s lives.

    • Please don’t be in such a hurry with the CA 125. It also give false negatives. Mine was 47 with a large ovarian cyst found when imaging for an inguinal hernia. When my surgeon said I needed a hysterectomy I was I total shock and refused. I had NO symptoms except being postmenopasual. He refused to do other testing, didn’t matter, I needed a hysterectomy. At a second appointment he said I would have a 50% chance of getting cancer in the other ovary. I still didn’t want the hysterectomy but decided I better do what he told me. After surgery I was told everything was benign. Although I was relieved I also feel my hysterectomy was unnecessary. I had a horrible recovery, after almost 2 years I still don’t feel recovered, and it negatively changed my life in many ways. Just recently I had another test and it was 39.

      • But CA125 is way cheaper and easier to rule out that horrible disease vs all those expensive scans.
        My Gyno for 2 yrs kept telling me I was 50 yrs old so my irregular bleeding was due to menopause and wanted to put me on hormones… told her no, that causes cancer.
        After 2nd year w irregular bleeding the pain on left side was unbearable so I went back. Gyno still thought it was menopause and I begged her to do some sort of easy test to rule out cancer… she then explained the CA125 test and said my insurance probably wouldn’t pay for it but I didn’t care and would pay the $200 bill . Well, within 3 hrs she called me back with news that CA125 at 76. Then went for CT scan which uncovered a mass in uterus and cyst on ovary. End result, Stage 3 – 2C uterine cancer that spread to lymph nodes. If I kept listening to Gyno… I wouldn’t be around to post this. Just a simple cheap test could rule out and save so many lives. After weeks of radiation w cisplatnum chemo and then 4 treatments of carbo taxol chemo, I am clear with CA125 at a 6.

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