CA125 for Uterine Cancer?

janh_in_ontario
janh_in_ontario Member Posts: 151 Member
in Uterine/Endometrial Cancer #1
I was diagnosed in Sept 2010 with Grade2 uterine cancer. After total hysterectomy it was found to be fully contained in the uterus. I was never given a stage - but told it was so mild I didn't need follow up treatment.
Last month I had bright red spotting (twice) and visted the gynocologist/Oncologist - he thinks it might be a recurrence - or it could be granulation - but he sees "brilliant blood in the vaginal vault". I go back next week for results of a swab/sample. He had trouble reaching it and couldn't do a biopsy.
I asked him about a CA125 test and he said "that isn't even for this cancer - that would be of no use" and yet everyone here in the UTERINE CANCER forum is spieling off CA125 numbers. Has anyone had this issue before with their DR?
I am in Canada and things are surely different - while I might not have to worry about the cost of any of these treatments - I have no control over who I see or where I go. I am supposedly going to one of the best in Toronto - but I can't help but wonder if there is more that we could be doing. I haven't had any kind of a scan or x-ray other than a chest x-ray the week before my surgery.
When I saw him in December he told me there was a 2% chance of recurrence -- and yet here I am facing that c word again. Freaking out but more importantly feeling out of control.
Any words of wisdom would be most appreciated.

jan

Comments

  • sue K
    sue K Member Posts: 18
    #2
    CA125
    Hi Jan
    I read your post with interest. I too was told that CA125 was not relevant to my cancer. I had total hysterectomy in 2009 to remove a large tumour, found to be contained in the uterus. It was grade 3 tumour. I had chemo and radiotherapy, and I believe I am now a 'ned'. The CA125 seems to be a good measure of how things are, and without that measurement, it is difficult to know for sure that there is no recurrence of the cancer.
    As you say, everyone here seems to speak of their CA125 numbers, but like you, I do not know why it is not appropriate for me.
    Good luck to you Jan
    Sue
  • Fayard
    Fayard Member Posts: 438 Member
    #3
    Hi Jan!
    I just finished chem on July 22 and had a an appointment last Friday.
    My doctor and I talked about CA125, and he said it is not a good indicator sometimes, unless you have symptoms or going under treatment to see if it is working.

    In my opinion, I think that a CA125 test would be helpful in your case, since you are having symptoms.

    How about a CS-Scan?
  • HellieC
    HellieC Member Posts: 524 Member
    #4
    CA 125 isn't always a good marker
    Hi Jan
    I live in England. I had a recurrence of uterine cancer 7 years after my hysterectomy, which just showed atypical hyperplasia, but no actual cancer, so recurrences do happen for a tiny minority, even if the cancer is at such an early stage that it is invisible! My recurrence was found after I started spotting. But spotting can indicate many things other than a recurrence, so please try not to worry.
    Regarding the CA 125 tumour marker, my oncologist says that it is not a particularly reliable marker for endometrial adenocarcinoma, but it can be useful for some patients, particularly those with sub types such as UPSC, which tend to behave a little more like ovarian cancer. I never had it measured until after surgery for my second recurrence. It measured around 15 after surgery and stayed around 12-13 all through chemo, so didn't really tell us much. I am currently NED and have FU appts every three months. I am hoping that my oncologist will also agree to years CT scans, just to check that everything is OK.
    Fingers crossed that your spotting is just some granulation that can be easily sorted.
    kindest wishes
    Helen
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #5
    HellieC said:

    CA 125 isn't always a good marker
    Hi Jan
    I live in England. I had a recurrence of uterine cancer 7 years after my hysterectomy, which just showed atypical hyperplasia, but no actual cancer, so recurrences do happen for a tiny minority, even if the cancer is at such an early stage that it is invisible! My recurrence was found after I started spotting. But spotting can indicate many things other than a recurrence, so please try not to worry.
    Regarding the CA 125 tumour marker, my oncologist says that it is not a particularly reliable marker for endometrial adenocarcinoma, but it can be useful for some patients, particularly those with sub types such as UPSC, which tend to behave a little more like ovarian cancer. I never had it measured until after surgery for my second recurrence. It measured around 15 after surgery and stayed around 12-13 all through chemo, so didn't really tell us much. I am currently NED and have FU appts every three months. I am hoping that my oncologist will also agree to years CT scans, just to check that everything is OK.
    Fingers crossed that your spotting is just some granulation that can be easily sorted.
    kindest wishes
    Helen

    Jan
    Helen's comments make sense. I have UPSC - a form of uterine cancer (papillary serous) that acts like ovarian cancer. CA125 is an ovarian cancer marker - hence your doctor's comments. However, it is a good marker for me. When it goes up, there is a problem for me. If your doctor is NOT an GYNECOLOGICAL ONCOLOGIST he may not be aware of this. I suggest you be treated by one of these. Seems like a doc should know this type of thing and troubling that he just was so flip about it. I hope you have option for a referral or second opinion.

    Wishing you the best. Mary Ann
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #6
    I am also UPSC. CA125 is
    I am also UPSC. CA125 is the key thing they look as a potential indication for recurrence.

    I can't comment on whether CA125 is relevant for other types of uterine cancer. UPSC, for all practical purposes, is really like OVCA - the only difference being the origin of the primary. So much so that my Dr's DX, after surgery, was UPSC, and the hospital pathologist's final opinion was OVCA.
  • jazzy1
    jazzy1 Member Posts: 1,379
    #7
    evertheoptimist said:

    I am also UPSC. CA125 is
    I am also UPSC. CA125 is the key thing they look as a potential indication for recurrence.

    I can't comment on whether CA125 is relevant for other types of uterine cancer. UPSC, for all practical purposes, is really like OVCA - the only difference being the origin of the primary. So much so that my Dr's DX, after surgery, was UPSC, and the hospital pathologist's final opinion was OVCA.

    CA125 marker for me..YES!
    I've got MMMT a more aggressive type cancer like UPSC. My doc followed my CA125 pre cancer, during treatments and post treatments. He can follow this marker, but not for everyone. Mine shows a very high number pre treatments at 550 and continually (key here) came down after each treatment. Post treatments it has stayed around 4-5.

    My doc (oncol OB) tells me if I have any symptoms to come in and do another CA125 and if it has gone up, bingo! off to CT scan. Now I do always have the option to add a CT scan if I so choose, but then I ask him what he thinks....he always reminds me his expert advice, follow the CA125. This cancer has a lot of similarities with ovarian cancer, in fact, many with ovarian do have MMMT.

    You might peek in on the ovarian site and see what you can find, as you'll find a lot of chatter about this tumor maker.

    Best to you...come back and let us know how you're fair...keep the faith!!
    Jan
  • sue K
    sue K Member Posts: 18
    #8
    jazzy1 said:

    CA125 marker for me..YES!
    I've got MMMT a more aggressive type cancer like UPSC. My doc followed my CA125 pre cancer, during treatments and post treatments. He can follow this marker, but not for everyone. Mine shows a very high number pre treatments at 550 and continually (key here) came down after each treatment. Post treatments it has stayed around 4-5.

    My doc (oncol OB) tells me if I have any symptoms to come in and do another CA125 and if it has gone up, bingo! off to CT scan. Now I do always have the option to add a CT scan if I so choose, but then I ask him what he thinks....he always reminds me his expert advice, follow the CA125. This cancer has a lot of similarities with ovarian cancer, in fact, many with ovarian do have MMMT.

    You might peek in on the ovarian site and see what you can find, as you'll find a lot of chatter about this tumor maker.

    Best to you...come back and let us know how you're fair...keep the faith!!
    Jan

    CA125 marker
    Hi Jan
    Like you, my cancer was/is uterine MMMT, and so it is strange that I was told that CA125 was not a good indicator for me. I wish it was available to me because as you say it is a good indicator of recurrence.
    Hope you continue to keep well
    Sue
  • janh_in_ontario
    janh_in_ontario Member Posts: 151 Member
    #9
    jazzy1 said:

    CA125 marker for me..YES!
    I've got MMMT a more aggressive type cancer like UPSC. My doc followed my CA125 pre cancer, during treatments and post treatments. He can follow this marker, but not for everyone. Mine shows a very high number pre treatments at 550 and continually (key here) came down after each treatment. Post treatments it has stayed around 4-5.

    My doc (oncol OB) tells me if I have any symptoms to come in and do another CA125 and if it has gone up, bingo! off to CT scan. Now I do always have the option to add a CT scan if I so choose, but then I ask him what he thinks....he always reminds me his expert advice, follow the CA125. This cancer has a lot of similarities with ovarian cancer, in fact, many with ovarian do have MMMT.

    You might peek in on the ovarian site and see what you can find, as you'll find a lot of chatter about this tumor maker.

    Best to you...come back and let us know how you're fair...keep the faith!!
    Jan

    Update on Recurrence
    Well, the swab came back normal! Good news! He did say that the swab was bloody and sometimes blood can mask the cancer so he took another swab.
    He also had a woman doctor come in and "take a look" and she said she thought everything looked perfectly healthy.
    Now we wait again for the results from the new swab and if I am still spotting he will send me to a urologist for a systoscopy (spelling must be wrong)to see if anything is going on with the bladder or urethra.
    But I am taking this all as good news.
    Will keep you posted!
    Jan
  • jazzy1
    jazzy1 Member Posts: 1,379
    #10
    sue K said:

    CA125 marker
    Hi Jan
    Like you, my cancer was/is uterine MMMT, and so it is strange that I was told that CA125 was not a good indicator for me. I wish it was available to me because as you say it is a good indicator of recurrence.
    Hope you continue to keep well
    Sue

    Sue
    Are you asking this question to me or the original poster of this thread who's also Jan??? In any event, not everyone can be followed via the CA125. It must show movement in the right direction prior treatments, during treatments and post treatments. Now mine showed the progress downward in a stable path, so I'm able to be followed. Not everyone can.

    I'd ask your doc again, but could it be your doc isn't up on MMMT. Our cancer is so much like ovarian and that cancer relies heavily on CA125 marker.

    Best to you,
    Jan
  • sue K
    sue K Member Posts: 18
    #11
    jazzy1 said:

    Sue
    Are you asking this question to me or the original poster of this thread who's also Jan??? In any event, not everyone can be followed via the CA125. It must show movement in the right direction prior treatments, during treatments and post treatments. Now mine showed the progress downward in a stable path, so I'm able to be followed. Not everyone can.

    I'd ask your doc again, but could it be your doc isn't up on MMMT. Our cancer is so much like ovarian and that cancer relies heavily on CA125 marker.

    Best to you,
    Jan

    Hi Jan (jazzy)
    I am
    Hi Jan (jazzy)
    I am interested in your experience because we have the same cancer. I spoke to my local doctor today regarding CA125, and he said that it is primarily recognised in being a good marker for ovarian cancer. He was not aware that it could also be a useful tool in detecting recurrences of uterine MMMT. He has taken blood today, and is going to consider if a measure of CA125 could be helpful for me. It is probably too late to be of much use in my case because it has never been measured. I don't think my oncologist at the hospital knows much about MMMT.
    All the best to you Jan,
    Sue
  • cleo
    cleo Member Posts: 144
    #12
    janh_in_ontario said:

    Update on Recurrence
    Well, the swab came back normal! Good news! He did say that the swab was bloody and sometimes blood can mask the cancer so he took another swab.
    He also had a woman doctor come in and "take a look" and she said she thought everything looked perfectly healthy.
    Now we wait again for the results from the new swab and if I am still spotting he will send me to a urologist for a systoscopy (spelling must be wrong)to see if anything is going on with the bladder or urethra.
    But I am taking this all as good news.
    Will keep you posted!
    Jan

    CA125
    To add to the international flavour. I live in NZ and the CA125 test is not an indicator for me [carcinosarcoma]. However the test is done as a matter of course and, for the sake of an additional blood phial, I consider it to be an indicator as far as I am concerned that I am on track.
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #13
    cleo said:

    CA125
    To add to the international flavour. I live in NZ and the CA125 test is not an indicator for me [carcinosarcoma]. However the test is done as a matter of course and, for the sake of an additional blood phial, I consider it to be an indicator as far as I am concerned that I am on track.

    CA 125
    Ditto from me in Israel. My DX July 15 th 2010, full hysterectomy and root Roger, but Ca cells escaped uterine walls. Stage Iv B Grade III endometrial Clear Cell Type Uterine AdenoCarcinoma.
    I am six months NED since the end of Chemo and my Ca 125 pre surgery was 95, post 84 and with Chemo down to 6-8. now i'm on Megace anto progesterone hormone and seem it helps keep it down under 10.

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