Question About CA-125

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ladyjogger31
ladyjogger31 Member Posts: 289
edited March 2014 in Ovarian Cancer #1
Hi,
I just finished my last of 8 rounds of carbo/taxol for stage 111c OVC. My CA-125 after my 7th chemo was 56. It is slowly comming down. I was told I will probably not see the normal range. My CT Scans have all been normal. Has anyone had their CA-125 stay above 35 and never reach normal and are cancer free.If so how long have you been in remission.They say don't worry about the numbers but I do.Any advise will greatly be appreciated.
Hugs and Paryers to all you.
Terry

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  • floridajo
    floridajo Member Posts: 480
    #2
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    Terry
    I am not one of those ladies whose number stays above the normal...however I do know of some women walking atound with numbers far up to 900..with no disease present on scans. You must be very sensitive to the test. I know of a gal who's ca-125 was 4000 after her debulking she was staged at 1c..and yet my ca-125 was 200 and I am a stage 3c. My Onc will not treat me anyway based on the numbers unless I'm having other symptoms as well. And usually if I'm having sx it shows up on my scans anyway. Congrats on the clear scans..and enjoy your time off chemo!!((hugz))~~~Joanne
  • green50
    green50 Member Posts: 312
    #3
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    Yes
    Terry it hasn't happened for me but my dr. said some have a normal of 54 and no more cancer so I believe its possible. I pray it is for you.
    Sandy Green
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #4
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    ca125 normal
    Hi Terry,

    My sister's never had cancer and her ca125 runs between 40-60, and I knew a woman who had 48 as a normal. Mine can be 7 and I still have measurable cancer. I guess what I am saying is everyone is different and until we have several measurements that stay the same without any cancer showing up on a ctscan, we don't know what are norm is. Praying this is the norm for you and you ARE dancing with NED. Hugs N Prayers Bonnie
  • saundra
    saundra Member Posts: 1,370 Member
    #5
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    Wide variety
    You can see that everyone is different. mine gradually decreased thru the 8 chemos and surgery to below 10 and has stayed there for ten months until the end of August when it was 29. My oncologist kept warning me that this might happen and we run the test each month. If it is still this high this next time (the 26th) we will conference with the gyn/onc and decided what to do. I have been told by my oncologist that the CA-125 seems to be a good marker for me as it steadily went down with the chemo each treatment. After four doses, it went from 2988 to 35 and the CT confirmed at least a 50% reduction in tumor size and some disappeared. After surgery and 4 more doses the CT was clear and the CA125 went below 10. Some months it was 4 which the oncologist said was seldom seen. From the variety of answers you have here, you can tell that we all are different. (((HUGS))) Saundra
  • bozeta
    bozeta Member Posts: 17
    #6
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    saundra said:

    Wide variety
    You can see that everyone is different. mine gradually decreased thru the 8 chemos and surgery to below 10 and has stayed there for ten months until the end of August when it was 29. My oncologist kept warning me that this might happen and we run the test each month. If it is still this high this next time (the 26th) we will conference with the gyn/onc and decided what to do. I have been told by my oncologist that the CA-125 seems to be a good marker for me as it steadily went down with the chemo each treatment. After four doses, it went from 2988 to 35 and the CT confirmed at least a 50% reduction in tumor size and some disappeared. After surgery and 4 more doses the CT was clear and the CA125 went below 10. Some months it was 4 which the oncologist said was seldom seen. From the variety of answers you have here, you can tell that we all are different. (((HUGS))) Saundra

    ca 125
    You guys have the best advice. I've had this disease since 4/06. Full hysterectomy, omentum removed, appendix , everything. No tumors afterwards, lympn clear, staged 111C. Spent 12 mo. in chemo. Taxol,taxotere, carboplatin and avastin. ca 125 went to 35, remission.My numbers continued to drop for 10 months lowest was 16. Then the 125 went to 60, my gyn/onc said we're not waiting to see if they keep going up so i was put back on chemo, same regiment, after a ct scan , it came back clear and still is. So the only marker they use on me is the ca125. For 13 tx my numbers have stayed between 60 & 104 up and down a little here a little there. They say I'm chronic stable anybody ever heard of that? and can live a long life with these numbers. Since there is no true evidence of disease, tumors etc.I am getting ready for a break for 60-90 days my choice of time, should I be concerned?I have great doctors and trust them.. Will continue to get ca 125 counts throughtout. This second round of chemo is it considered a recurrence? Or only if a tumor appears somewhere? Thanks for any help you can give me.

    Liz
  • saundra
    saundra Member Posts: 1,370 Member
    #7
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    Texas Oncology
    My gyn/onc., Dr. Allen Stringer, Dept. head at TX Oncology, says they use three indicators, the CT scan, CA-125, and a physical exam. If all three indicate NED, then you are considered clear for now. How long that last is different for each of us. He was trained and worked for M.D. Anderson in Houston for several years. So I think I have the best that is in Texas. I will have to wait until Oct. 15 to get the new CT and physical results but will have the new CA125 on the 30th when I have chemo again, to see if the count is still over 21.
  • Dreamdove
    Dreamdove Member Posts: 175 Member
    #8
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    bozeta said:

    ca 125
    You guys have the best advice. I've had this disease since 4/06. Full hysterectomy, omentum removed, appendix , everything. No tumors afterwards, lympn clear, staged 111C. Spent 12 mo. in chemo. Taxol,taxotere, carboplatin and avastin. ca 125 went to 35, remission.My numbers continued to drop for 10 months lowest was 16. Then the 125 went to 60, my gyn/onc said we're not waiting to see if they keep going up so i was put back on chemo, same regiment, after a ct scan , it came back clear and still is. So the only marker they use on me is the ca125. For 13 tx my numbers have stayed between 60 & 104 up and down a little here a little there. They say I'm chronic stable anybody ever heard of that? and can live a long life with these numbers. Since there is no true evidence of disease, tumors etc.I am getting ready for a break for 60-90 days my choice of time, should I be concerned?I have great doctors and trust them.. Will continue to get ca 125 counts throughtout. This second round of chemo is it considered a recurrence? Or only if a tumor appears somewhere? Thanks for any help you can give me.

    Liz

    just being precautious
    Bozeta, I don't think because they put you on chemo again that it's considered a recurrence. They are just being precautious. I have to have 3-month checkups (ovarian cancer Jan. 2007) and always get a CA-125 test. I am having another one soon, near end of month. So far so good. I had to be hospitalized Dec. 2007 for a bowel obstruction and I thought that meant the cancer had returned but it did not. The CA-125 was fine, x-rays were fine, as was the CT scan. I'm 16 months cancer-free and I hope I don't have to go thru THAT again!
  • gerimay132003
    gerimay132003 Member Posts: 5
    #9
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    what is ca-125
    i'm a 5 year utreian/ovarian survivor and i've never heard of this test what is it and what do the numbers mean
  • mopar
    mopar Member Posts: 1,972 Member
    #10
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    gerimay132003 said:

    what is ca-125
    i'm a 5 year utreian/ovarian survivor and i've never heard of this test what is it and what do the numbers mean

    CA125??
    Wow! I think you're the first person I've met that is not familiar with this test as an ovarian cancer survivor.

    First of all, congratulations on your survivorship! I hope you come back to visit us often and share your life and experiences with us. It is an unfortunate way to meet, but ends up being a real blessing to everyone here. This is a great group of strong, inspirational women.

    Well, CA125 is a protein that shows up in the blood and is considered merely a 'cancer antigen marker'. In other words, you could have a high level and have no cancer, or have a low level and have cancer, and every scenario in between. As you've probably read, there are women who have had numbers into the hundreds and have been NED (no evidence of disease). And while many of us aspire to reach the lowest number possible, some women have had levels of 5 or 6 and have had cancer. The bottom line is that each individual situation is different.

    When this all first started for me, the range that most doctors and labs used was 0-35. Now it has changed (at least at my lab) to 0-21. For example, if you are having problems and your level is maybe around 19 or 20, the doctor may order additional tests to rule out any potential problems. As time goes on, they will take this test routinely to watch for a rise in numbers to again alert them to possible problems. Now you have a general idea of what is 'normal' for you and you can use this test in conjunction with other tests to be watchful.

    The unreliable part about this test is that the CA125 can rise for a number of reasons. When I was diagnosed I had no symptoms at all, just a uterine fibroid. My doctor gynecologist ordered a CA125 test which I wasn't even aware was included in the blood work, until he called me one night. It was 48, well over the 0-35 range. However, I had the fibroid, as well as endometriosis, both of which could have been responsible for this number. But he sent me to a gynecologic/oncologist, which to this day, I will be eternally grateful for. During surgery to remove the fibroid they discovered ovarian cancer.

    Since then, I had my CA125 tests monthly, then every other month, etc. After surgery, chemo, etc., I found my 'normal' range. Six years later, when it started to climb (again, no symptoms), my doctor scheduled another surgery and I had a recurrance. So for me, the numbers are a big help to at least give us some feedback. I will say, however, that it will go up from stress, infections, inflammation, etc. But it's the consistent rise in numbers that alerts us that something may be going on.

    Well, I know this was lengthy, but I hope this helped you understand what it's all about. You can also Google 'CA125' and you will get more information.

    Let us know how you are doing, and maybe share what you've been through with us. We like to toss ideas back and forth, share thoughts, and mostly there are tons of shoulders to lean on here.

    Have a wonderful day!
    Monika
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #11
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    mopar said:

    CA125??
    Wow! I think you're the first person I've met that is not familiar with this test as an ovarian cancer survivor.

    First of all, congratulations on your survivorship! I hope you come back to visit us often and share your life and experiences with us. It is an unfortunate way to meet, but ends up being a real blessing to everyone here. This is a great group of strong, inspirational women.

    Well, CA125 is a protein that shows up in the blood and is considered merely a 'cancer antigen marker'. In other words, you could have a high level and have no cancer, or have a low level and have cancer, and every scenario in between. As you've probably read, there are women who have had numbers into the hundreds and have been NED (no evidence of disease). And while many of us aspire to reach the lowest number possible, some women have had levels of 5 or 6 and have had cancer. The bottom line is that each individual situation is different.

    When this all first started for me, the range that most doctors and labs used was 0-35. Now it has changed (at least at my lab) to 0-21. For example, if you are having problems and your level is maybe around 19 or 20, the doctor may order additional tests to rule out any potential problems. As time goes on, they will take this test routinely to watch for a rise in numbers to again alert them to possible problems. Now you have a general idea of what is 'normal' for you and you can use this test in conjunction with other tests to be watchful.

    The unreliable part about this test is that the CA125 can rise for a number of reasons. When I was diagnosed I had no symptoms at all, just a uterine fibroid. My doctor gynecologist ordered a CA125 test which I wasn't even aware was included in the blood work, until he called me one night. It was 48, well over the 0-35 range. However, I had the fibroid, as well as endometriosis, both of which could have been responsible for this number. But he sent me to a gynecologic/oncologist, which to this day, I will be eternally grateful for. During surgery to remove the fibroid they discovered ovarian cancer.

    Since then, I had my CA125 tests monthly, then every other month, etc. After surgery, chemo, etc., I found my 'normal' range. Six years later, when it started to climb (again, no symptoms), my doctor scheduled another surgery and I had a recurrance. So for me, the numbers are a big help to at least give us some feedback. I will say, however, that it will go up from stress, infections, inflammation, etc. But it's the consistent rise in numbers that alerts us that something may be going on.

    Well, I know this was lengthy, but I hope this helped you understand what it's all about. You can also Google 'CA125' and you will get more information.

    Let us know how you are doing, and maybe share what you've been through with us. We like to toss ideas back and forth, share thoughts, and mostly there are tons of shoulders to lean on here.

    Have a wonderful day!
    Monika

    great Explanation
    Hey Monika, Great explanation!! Better than most medical people could do. :-) Thanks for taking the time to write in such detail, I am sure it helped lots of people. Hugs Bonnie
  • saundra
    saundra Member Posts: 1,370 Member
    #12
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    Monika
    Great answer. Can't add any more to that.
  • zenkitty
    zenkitty Member Posts: 4
    #13
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    CA-125
    The CA-125 blood test has not been accurate in detecting my ovarian cancer. After my 3rd chemo treatment (in my first round of chemo) my CA-125 began to drop and did so consistently. We felt very encouraged. It was at a "normal" level after my first round of chemo and has stayed there. Needless to say I was very happy. At my one year check-up I was feeling relatively unconcerned about a reoccurence due to my low CA-125 numbers. I was surprised when my doctor said he thought felt another tumor during the physical exam. A CT scan confirmed his finding. I am currently undergoing additional chemo (doxil). A CT scan after four treatments indicated the tumors are shrinking. I will have another scan in December. My CA-125 numbers rose slightly at my last visit but have remained in the "normal" range throughout treatment. For me, the CA-125 test is just not an accurate indicator of my cancer status. It is a bit frustrating. My doctor said he does not know why the test is more accurate in some patients than others.

    In peace, Hannah
  • mopar
    mopar Member Posts: 1,972 Member
    #14
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    SORRY FOR YOUR RECURRENCE
    Well Hannah, sorry you had to go through this again. Maybe one day they will come up with a conclusive, reliable test that will give all of us women fair warning, long before this disease has progressed. Until then, at least you know in your case it's not really the best way to be sure about anything, that it's a combination of diagnostic methods. And I think no matter what anyone's numbers, that's the bottom line. This test is just too unpredictable to rely on it alone.

    Luv and hugs,
    Monika
  • Unknown
    Unknown
    #15
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