Uterine MMMT: Does Your Oncologist Use CA125 test?

RoseyR
RoseyR Member Posts: 471 Member
in Uterine/Endometrial Cancer #1
My oncologist NEVER mentioned CA125 test in a year of treatment. I did check my blood tests and only occasionally was CA125 tested; it was always less than 15.

Are those of you with uterine carcinosarcoma being asked to get tested for this marker every three months?

I thought it was not very reliable for this form of uterine cancer.

Appreciatively,
Rosey

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Your results are typical
    Ca 125 has been around for a long time. It has been well-researched and has application for epithelial ovarian Ca. It has far les application for any other form of cancer.

    In epithelial ovarian, it is elevated about 80% of the time. For the other 20% it is of no value. This doesn't get talked about much on the survivor board.

    For MMMT, Ca125 is less-well researched, but the studies done indicate it is only elevated about half the time. In your case, it has been checked, it just isn't worth following.

    Other markers have been looked at in MMMT. CEA is up less than 10%, and other markers are even worse. So yes, your oncologist is being pretty thorough checking a marker like this, but it probably hasn't taken up much of your office time. And these tumor markers are only followed if they are elevated to begin with. They do not just turn positive suddenly later on. The tumor either elaborated the marker to begin with, or it didnt.

    Best regards
  • RoseyR
    RoseyR Member Posts: 471 Member
    #3
    longtermsurvivor said:

    Your results are typical
    Ca 125 has been around for a long time. It has been well-researched and has application for epithelial ovarian Ca. It has far les application for any other form of cancer.

    In epithelial ovarian, it is elevated about 80% of the time. For the other 20% it is of no value. This doesn't get talked about much on the survivor board.

    For MMMT, Ca125 is less-well researched, but the studies done indicate it is only elevated about half the time. In your case, it has been checked, it just isn't worth following.

    Other markers have been looked at in MMMT. CEA is up less than 10%, and other markers are even worse. So yes, your oncologist is being pretty thorough checking a marker like this, but it probably hasn't taken up much of your office time. And these tumor markers are only followed if they are elevated to begin with. They do not just turn positive suddenly later on. The tumor either elaborated the marker to begin with, or it didnt.

    Best regards

    Thanks for your response, and ...

    Really appreciate your clarifications. What you say makes sense.

    Do you agree I should find out is whether my CA125 was elevated prior to surgery? If not, then there seems no sense in checking it now.

    May I ask what CEA is? You say it is up less than 10%--meaning less than ten percent of the time? And other markers, you say, are "even worse"--meaning even less reliable in showing the state of disease?

    Thanks so much,
    Rosey
  • jazzy1
    jazzy1 Member Posts: 1,379
    #4
    RoseyR said:

    Thanks for your response, and ...

    Really appreciate your clarifications. What you say makes sense.

    Do you agree I should find out is whether my CA125 was elevated prior to surgery? If not, then there seems no sense in checking it now.

    May I ask what CEA is? You say it is up less than 10%--meaning less than ten percent of the time? And other markers, you say, are "even worse"--meaning even less reliable in showing the state of disease?

    Thanks so much,
    Rosey

    CA125
    Great topic ladies!!! My doc has dealt with MMMT type cancer as pre-treatments thru post treatments has followed my CA125. I started at well over 500 and after each and every treatment my tumor marker came down "consistently", until now 3 years later still at 4-5 range. My doc can follow as he followed it from beginning to end, thru today NED. NOTE: this marker is used as well with ovarian cancer.

    Doc told me many people start with a low CA125 pre-treatments, and finds very little change throughout the cancer treatment journey, therefore, not a reliable marker for them.

    I've had many conversations with my doc and he feels confident we can follow this marker for ME as more reliable, but we still do scans (less frequently). Not sure if many docs do follow CA125 for whatever reason. Each of us is unique and each doc brings to the patient table different past experiences. All I can tell you, this is what MY DOC SUGGESTS FOR ME, as possibly not the same for his other patients with similar cancer.

    Rosey, I'd at least bring up this topic with your doc...but did he even gather your CA125 numbers at beginning of your cancer journey? Would think this is a valuable starting point...beginning.

    Hugs,
    Jan
  • Susanna23
    Susanna23 Member Posts: 66 Member
    #5
    jazzy1 said:

    CA125
    Great topic ladies!!! My doc has dealt with MMMT type cancer as pre-treatments thru post treatments has followed my CA125. I started at well over 500 and after each and every treatment my tumor marker came down "consistently", until now 3 years later still at 4-5 range. My doc can follow as he followed it from beginning to end, thru today NED. NOTE: this marker is used as well with ovarian cancer.

    Doc told me many people start with a low CA125 pre-treatments, and finds very little change throughout the cancer treatment journey, therefore, not a reliable marker for them.

    I've had many conversations with my doc and he feels confident we can follow this marker for ME as more reliable, but we still do scans (less frequently). Not sure if many docs do follow CA125 for whatever reason. Each of us is unique and each doc brings to the patient table different past experiences. All I can tell you, this is what MY DOC SUGGESTS FOR ME, as possibly not the same for his other patients with similar cancer.

    Rosey, I'd at least bring up this topic with your doc...but did he even gather your CA125 numbers at beginning of your cancer journey? Would think this is a valuable starting point...beginning.

    Hugs,
    Jan

    Ca 125
    I'll just add my experience. I wish I had had my Ca 125 measured at diagnosis. During chemo it was measured routinely several times (I think because the treatment was considered, on the chemo ward, to be an ovarian cancer regime) but my doctors always reluctant to place significance on it. Apparently values were around 15, 16....said to be normal. I have had several conversations about this issue (I bring it up every time I have a check up) and they believe it is not a reliable marker in uterine cancer. But if I had had an elevated level prior to surgery we might view it differently, of course. In fact, at my last appointment my gyn/onc said he doesn't even think it's a reliable marker for ovarian cancer! I guess new evidence is coming out all the time. I know there's work going on with a whole host of different marker molecules and it's always hard to validate them.
    Best wishes
    Susan
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    RoseyR said:

    Thanks for your response, and ...

    Really appreciate your clarifications. What you say makes sense.

    Do you agree I should find out is whether my CA125 was elevated prior to surgery? If not, then there seems no sense in checking it now.

    May I ask what CEA is? You say it is up less than 10%--meaning less than ten percent of the time? And other markers, you say, are "even worse"--meaning even less reliable in showing the state of disease?

    Thanks so much,
    Rosey

    Yes, that's a good question
    If your CA 125 was elevated prior to surgery, that puts you in a different catagory. And it would make more sense to know what the follow up numbers are. Remembering that all the normal ranges were obtained from CA of the OVARY literature, so the application is likely not perfect.

    What is generally done in ovary is that the levels are obtained prior to debulking surgery, which excludes those people who don't have the elevation to begin with. Those are definitely people who don't get a big benefit from long term CA125 follow-up post debulking.

    Those that are high (generally greater than 35) before surgery, are followed after surgery at periodic intervals. The numbers are then contrasted to the first CA125 obtained AFTER debulking (not the one from before surgery). That's the number that comparitively tells if titers are rising or falling.

    On CEA and other markers, there are truly a zillion of them, and a few have certain clinical applications. CEA can be used in certain gyn malignancies, but is the classic marker used for colon cancer follow-up. It is similar chemically, and in its clinical use, to the Ca 125. And yes, unfortunately, less reliable is exactly what I meant. It is an indication of how difficult these diseases are, when all these year of research (CEA has been available in the lab for probably 35 years) we haven't come up with better tumor marker studies. But we haven't. Jazzy and Susanna raise very valid points.

    Best to you.
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #7
    longtermsurvivor said:

    Yes, that's a good question
    If your CA 125 was elevated prior to surgery, that puts you in a different catagory. And it would make more sense to know what the follow up numbers are. Remembering that all the normal ranges were obtained from CA of the OVARY literature, so the application is likely not perfect.

    What is generally done in ovary is that the levels are obtained prior to debulking surgery, which excludes those people who don't have the elevation to begin with. Those are definitely people who don't get a big benefit from long term CA125 follow-up post debulking.

    Those that are high (generally greater than 35) before surgery, are followed after surgery at periodic intervals. The numbers are then contrasted to the first CA125 obtained AFTER debulking (not the one from before surgery). That's the number that comparitively tells if titers are rising or falling.

    On CEA and other markers, there are truly a zillion of them, and a few have certain clinical applications. CEA can be used in certain gyn malignancies, but is the classic marker used for colon cancer follow-up. It is similar chemically, and in its clinical use, to the Ca 125. And yes, unfortunately, less reliable is exactly what I meant. It is an indication of how difficult these diseases are, when all these year of research (CEA has been available in the lab for probably 35 years) we haven't come up with better tumor marker studies. But we haven't. Jazzy and Susanna raise very valid points.

    Best to you.

    after all the research....
    It IS very discouraging that tumor markers are either non-existent or unreliable. So much research, so few results.

    Always glad when you share your knowledge. Thanks

    JoAnn
  • RoseyR
    RoseyR Member Posts: 471 Member
    #8
    JoAnnDK said:

    after all the research....
    It IS very discouraging that tumor markers are either non-existent or unreliable. So much research, so few results.

    Always glad when you share your knowledge. Thanks

    JoAnn

    Thanks, All, for these Comments

    Will look over my med records to see if they even TOOK a pre-operative CA125 measure and if so, what it was.

    If they didn't, and it has remained under 15 through nine months of treatment and a few months afterwards, must admit I resent being asked to take the test every three months if it is so unreliable a marker for my kind of tumor. (Do we really need this tension around tests if they are not good measures of anything?)

    But Jazzy has a point: we're all individuals and her own WAS much elevated before surgery.

    Thanks,
    Rosey
  • jazzy1
    jazzy1 Member Posts: 1,379
    #9
    RoseyR said:

    Thanks, All, for these Comments

    Will look over my med records to see if they even TOOK a pre-operative CA125 measure and if so, what it was.

    If they didn't, and it has remained under 15 through nine months of treatment and a few months afterwards, must admit I resent being asked to take the test every three months if it is so unreliable a marker for my kind of tumor. (Do we really need this tension around tests if they are not good measures of anything?)

    But Jazzy has a point: we're all individuals and her own WAS much elevated before surgery.

    Thanks,
    Rosey

    CA125
    FYI, "generally" this marker range is 0-35...anything above might bring up a red flag. Not necessarily meaning recurrence, but a possible watch. Thinking I've read of a few of you ladies here with an elevated marker, and docs only suggest a watch....correct?

    Just a guide as with everything associated with cancer, things can change and nothing is 100% reliable.

    Jan
  • nempark
    nempark Member Posts: 681
    #10
    ca 125 not for me
    Hi I am two years in remission. MMMT 1a grade 3 had chemo did not know anything about cancer and what questions to ask. Doctor says that ca 125 in not a marker for me.
  • Karenhopeful
    Karenhopeful Member Posts: 38
    #11
    nempark said:

    ca 125 not for me
    Hi I am two years in remission. MMMT 1a grade 3 had chemo did not know anything about cancer and what questions to ask. Doctor says that ca 125 in not a marker for me.

    ca 125 not used for me
    Just adding another voice. My doctor does not check ca 125 for uterine adendocarcinoma.
  • kfparke
    kfparke Member Posts: 8
    #12
    Karenhopeful said:

    ca 125 not used for me
    Just adding another voice. My doctor does not check ca 125 for uterine adendocarcinoma.

    CA125 Comment
    I didn't have CA125 done till after first chemo treatment and it was 15 at that time. Then had it checked three weeks after my final (#6) treatment and it was 8. I continue to have this test every 3 months now and this last quarterly checkup it was 6. My gyn/oncologist does do this test but also put caveats on interpretation of the results. I was diagnosed with Uterine carcinosarcoma Stage 1A Grade 3 Nov 2010, had six treatments carbo/taxol early 2011 and NED since June 2011.

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