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

 

 

Blood Biomarkers & Endometriosis

Vacutainer_blood_bottles

You may have read some of my previous blogs about biomarkers…blood tests for things which may help doctors diagnose Endometriosis without surgery, such as CA-125 levels.  There are a lot of hopes that indicators may help save costly diagnostic surgeries, surgical risks, and painful recoveries.

A study published on May 1, 2016, reviewed 141 past studies and analyzed the data.

It does not look good for us, ladies and gents.  Well, not yet at least.  It concludes, “Overall, there is not enough evidence to recommend testing for any blood biomarker in clinical practice to diagnose endometriosis.”  If you’d like to read it for yourself, please click here.

A study published on July 27, 2016, however, holds hope that the CA-125 test may “rule in” Endometriosis.  You can read it here.  It is supported by a December 2016 study, which you can read here.  Unfortunately, a 2017 study (read it here) found that due to the fluctuating levels of CA-125 throughout a woman’s menstrual cycle, as well as the fact that CA-125 is not exclusive to Endomtriosis, does not make it a recommended diagnostic tool (yet).

A November, 2016 publication stated that women with Endometriosis may have elevated MiRNA (micro RNA) gene biomarkers.  Strides are being made to identify proteins and glycoproteins (like CA-125) that may be more prevalent in women with Endometriosis.  Although inflammation is a major syptom of Endometriosis, research into cytokines and chemokines (which may point to inflammation) appear equal in women with and without Endometriosis.  However, potential is being shown for using IL-8, TNF-α, and CA125 as a combined biomarker panel to help diagnose the presence of Endometriosis.  Research into identifying biomarkers in urine and peritoneal fluid is also ongoing.  All the science in this is waaaaaay over my head…but if it leads you to a specific conversation with your doctor, or delves you deeper into researching it yourself, my job here is done!  You can read it here.

Hoping that future research can continue to push forward on non-invasive diagnostic tools.

*Updated April 6, 2017*

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa