CA 125 for ovarian cancer

My mom has several liver mets and her CA 125 is 28. I don't think the test is that reliable. 

 Good Friday morning Medical, Pam, Trinity & Debrajo

 I’ve had trouble with CSN and its SECURITY ERROR message for a month or so now.  That’s ever since they “improved” the site.  Ha! Improved…not hardly.  Last night I had an urgent message I needed to get to another fella.  He had sent me a private msg. and when I answered and tried to “submit” it, IT WOULD NOT GO!  And yes, I sent another msg. to the “techs?”  And if they read this, they will know that they have at least a dozen messages from me.  I’m now putting HELP in my text, saying please find a tech that can fix this and then give him/her a raise!  They’ve offered a couple of suggestions that did NOT work.  Lately, I’m not even getting a reply.  And if anyone monitoring this site is reading this particular letter, please try again.  I’m not the only one having this problem, but mine is most often when I try to submit a letter with some particular web reference in it.  It is oh so maddening when this happens.  Our time is valuable, and when we take the time to answer someone and this site “kicks it out”, all I can do is scream!  Believe me, I have much more to do than sit at my computer all day and play “solitaire!”  We cancer patients don’t have a minute to waste!

             Anyway, one message did not go last night, but another one did.  I had doctor’s appointments yesterday myself, and did not sit down to peruse the site till late.  I did send Trinity a letter.  I don’t know about other ladies here, but many of them are probably overwhelmed with their diagnosis and not “feeling so hot”, and probably don’t feel like answering on any given day.  I have unexplainable aches & pains and it goes along with having Stage IV cancer.  And even this morning, I have an unexplainable pain in my left shoulder blade.  And yes, I keep in constant touch with my oncologist, but he is not a “handyman” and can’t “fix” everything!  So my CT scheduled for June 2 will tell me more.  And yes, when you wake up with a new pain in a new place, you have to “fight the fear” to “misdiagnose” the problem.  And so you wait.  A lot of this cancer is about “loitering in God’s waiting room” if you ask me!   

 And no doubt the ladies read the posts here, and perhaps don’t feel like they have anything much to offer so they just read it and say a silent prayer.   And really, there are a lot of questions and not very many answers once you’ve been diagnosed with Ovarian cancer.  Some cancers are easier to treat than others.  And with a Stage IV, hope for a cure is usually illusive, and only by the grace of God if there is one, because there is no known cure for Stage IV Ovarian Cancer.  There are treatments that can temporarily lower the CA125 number but no specific FIX!  Hate to say it, but as I told “Trinity” in her letter that I was able to post about 1:15 A.M., IT IS WHAT IT IS. 

 The most I can do is ask the Lord to give me the will to live, the physical strength to endure and the inner peace that only He can give to keep me living “above the circumstances.”  It goes without saying for all of us, and Debrajo I appreciate your visiting this board, and helping out.  You do a good job at that.  I see your name often.  All of us are pretty much in the same boat.  And we’re all trying to help each other keep our heads above water.  So keep checking on us.  Thanks, and I will see once more if I can get my letter to post to Medical.  And also by way of explanation for any newbies “or oldies”, there’s not necessarily any patient “assigned to the  duty desk” when another patient writes in.  All of us have varied schedules, but I do know that if everyone of us didn’t care, we wouldn’t even bother to sit down and say hello.  We are “all in the same boat”, and some days the waves are higher than in others.

 Much love and hope to all who “read” here and to all who “lurk” here.  God help us all to live and love another day.

 Loretta - Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

foundationforwomenscancer.org/wp-content/uploads/CA125levels.pdf

“UNDERSTANDING CA125 levels

“… CA 125 is a substance found in the blood called a glycoprotein (a sugar associated protein). It is commonly referred to as a “biomarker” — or “tumor marker” — because it provides information about the biological state of a disease (ovarian cancer) and is obtained by a blood sample from which a level can be measured.

But it is more accurately considered a “tumor associated protein” because elevated CA 125 levels do not always indicate ovarian cancer and levels can misrepresent a biological state.

For instance, CA 125 can be absent when disease is present, or levels can be high when no disease or no malignant disease exists.

In addition, two patients with the same level can have widely different disease burdens. As you’ll see or have personally experienced, this is certainly the case for ovarian cancer patients. Nevertheless, as a tool, serial changes in CA 125 levels, if elevated, can be fairly representative of disease status and frequently very helpful in the assessment of women with ovarian cancer…

Monitoring changes in the CA 125 value while on treatment can provide some of the earliest clues that your therapy is working.  However, it’s important not to over-interpret the values.

For instance, some chemotherapy and biologic agents used in recurrent disease treatment, such as pegylated liposomal doxorubicin (Doxil) and topotecan (Hycamtin), require closer scrutiny as a significant number of patients may have a rise in their CA 125 values — as much as 30% — after their first cycle of chemotherapy, and yet still will go on to respond to these drugs upon continued administration.

Some patients even had a CA 125 rise after their second or even third cycle, and still had a favorable treatment outcome. Similarly, bevacizumab, a targeted biologic agent, may cause elevated CA 125 values despite having a positive treatment effect. So, CA 125 values can and do fluctuate.

Major treatment decisions, such as changing or discontinuing treatment, depend on multiple factors that you and your physician will consider. The trend in your CA 125 values is only one of these factors...

A Final Note 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. Gynecologic oncologists, obstetrician-gynecologists with an additional three to four years of training in the comprehensive treatment of women with gynecologic cancers, are specifically knowledgeable about how to interpret what a CA 125 test result means in the treatment of ovarian cancer. For information on how to find a gynecologic oncologist, and general information about ovarian and other women’s cancers, please visit foundationforwomenscancer.org…”

Here are some places where you can find more information and understanding about the importance of our CA-125 counts.

mayoclinic.org/tests-procedures/ca-125-test/basics/results/prc-20009524

“Tests and Procedures - CA 125 test - Definition - Why it's done - How you prepare - What you can expect - Results

It will tell you why it is done, how to prepare, and what you can expect plus what the results mean.  It reads:

“Results of the CA 125 test are measured in units per milliliter (U/mL). The normal value is less than 35 U/mL.

If your CA 125 level is higher than normal, you may have a benign condition, or the test result could mean that you have ovarian, endometrial, peritoneal or fallopian tube cancer. Your doctor may recommend other tests and procedures to determine your diagnosis.

If you've been diagnosed with ovarian, endometrial, peritoneal or fallopian tube cancer, a decreasing CA 125 level often indicates that the cancer is responding to treatment. A rising CA 125 level may indicate a return or continued growth of the cancer…”

Here is a second source:

medicinenet.com/ca_125/page2.htm

“What does an elevated CA 125 level indicate, and how is the CA 125 test used?

It is not possible to interpret the meaning of an abnormally high CA 125 without additional information about the particular patient being evaluated. The reason is that blood levels of this protein can be increased in many different benign and malignant conditions, and an elevated level does not mean that cancer is present. CA 125 is used most often to monitor patients with a known cancer (malignancy) or as one of several tests in the workup of a patient suspected of having a tumor.

The most common use of the test is the monitoring of people with a known cancer that elevates CA 125 level, such as cancer of the ovary. Around 75% to 85% of women with epithelial cancer of the ovary will have an elevated CA 125 level. In the patient who is known to have a malignancy, such as ovarian cancer, the CA 125 level can be monitored periodically.

A decreasing level generally indicates that therapy, including chemotherapy, has been effective, while an increasing level indicates tumor recurrence. Because of normal test variation, small changes are usually not considered significant. A doubling or halving of the previous value would be important.

In the patient who is being evaluated for a pelvic mass, a CA 125 level greater than 65 is associated with malignancy in approximately 90% of cases. However, without a demonstrable mass, the association is much weaker…”