I asked my Doc about CA-125

Vacutainer_blood_bottles

Many of you EndoSisters may have heard, or are following, the use of the biomarker CA-125 as a possible indicator of the presence of Endometriosis (read more here).  I had my annual pap smear appointment this week and figured I’d ask my doc to see if they’d run blood tests with my usual annual bloodwork.

I went in fully aware and understanding that CA-125 is considered an unreliable test for Endometriosis for many reasons: it could be elevated due to other factors, it may read a false positive, or CA-125 levels may vary naturally throughout our menstrual cycles.

The conversation went pretty much as expected.  My request was ultimately denied, but at my acceptance.  Had I insisted, I’m sure it would have been accommodated.  Reasons given for denial:

  1. CA-125 test results may be false positives;
    1. The levels vary throughout our menstrual cycle;
    2. Even if I only have an ovarian mass that is non-cancerous (which I don’t…), my CA-125 levels may still be elevated, leading to a false positive;
    3. Elevated CA-125 levels may be due to several reasons, not just Endometriosis;
    4. If a false positive were received; a whole slew of tests would have to take place: why is it positive?  Indicative of cancer? Endometriosis? Something else?
  2. I have no family history of ovarian cancer;
    1. If I had, then MAYBE the test would be justified.
  3. Insurance may not cover the cost;
    1. Without proper justification (aka ovarian mass or history of cancer), insurance would likely deny payment…and it’s over a $500 blood test.

Given the fact that the many studies of CA-125 and Endometriosis tend to express that CA-125 is not (yet) an accurate indicator of the presence or recurrence of Endometriosis, I’m okay with not testing my CA-125 levels.

I was nervous asking because I knew of the general opinion associated with the tests for Endometriosis.  BUT, I asked anyway.  I also don’t feel like my doctor judged me for asking.  And now I don’t have to wonder…

But I know there are gals out there who DO test their CA-125 levels and I must ask: how’s that working out for you? What has been your experience? Did you have to convince your doctor? Does your insurance cover it?  Share in our comments below!

(This is PURELY my opinion.  Please feel free to express yours, and always feel free to counter what I say.  I’m just a gal with Endo.)

~Lisa