I've joined the CA125 club.

CindyGSD
CindyGSD Member Posts: 190
in Uterine/Endometrial Cancer #1
Well after thinking that the CA125 marker was not a good one for me, or not even something that my doctor considered as a tool, I found out today at my Dr appt that but she, my doctor has been using it all along.

Though they never got a number before my surgery thinking I had leiomyosarcoma, they have been monitoring it during all my chemo treatments and its been in the normal range, the last reading was 12.

I have mixed feelings about it. I don't want to be a slave to the numbers but its nice to know that I have some way to monitor any cancer progression other then just getting a scan.

Guess it pays not to make assumptions and actually ask your doctor about things. She didn't even tell me about it, I just saw CA125 - 12 written in the notes she was taking. I think she was surprised I knew so much about it.

Cindy

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
    Cindy:
    Your response just
    Cindy:

    Your response just got me to thinkng because I too assume that my new doctor hasn't been using the CA125. So as a personal question, if you don't mind me asking, do you think it is better not to know ALL of the details?

    With my new doctor, I haven't seen any of the reports. I know that when my surgery was in February of 2010 one of my lymph nodes were found to have microscopic cells. But I never have seen any reports. I am on a wait and see approach with no treatment required since then. I am to report anything out of the ordinary to him. I have never asked for any of my records from my new doctor and he believes in positive actions and he would answer any questions I would ask him, but I have never asked him those point blank questions. All I know is that if it does come back in the same area, that one of the risks is that I may lose function of my left leg, colostomy, etc.

    Remember,I am only asking this for my own reasoning. Did you feel better knowing that your CA125 wasn't a marker? How do you feel about it now that you know?

    I think if I started to have symptoms, then I would ask my doctor more about my records. I was just informed now that they will only be taking scans once a year now unless you are symptomatic. Since my surgery in 2010 I was getting one every 6 months.
    I felt a little unnerved by this but when I look back at my history since 2005, all of my scans, whether CT, CTPET, PET, MRI, ultrasound, laparoscopy, XRays, were negative. Go figure.

    Caring thoughts to you!

    Kathy
  • barbakamom
    barbakamom Member Posts: 15
    #3
    Kaleena said:

    Cindy:
    Your response just
    Cindy:

    Your response just got me to thinkng because I too assume that my new doctor hasn't been using the CA125. So as a personal question, if you don't mind me asking, do you think it is better not to know ALL of the details?

    With my new doctor, I haven't seen any of the reports. I know that when my surgery was in February of 2010 one of my lymph nodes were found to have microscopic cells. But I never have seen any reports. I am on a wait and see approach with no treatment required since then. I am to report anything out of the ordinary to him. I have never asked for any of my records from my new doctor and he believes in positive actions and he would answer any questions I would ask him, but I have never asked him those point blank questions. All I know is that if it does come back in the same area, that one of the risks is that I may lose function of my left leg, colostomy, etc.

    Remember,I am only asking this for my own reasoning. Did you feel better knowing that your CA125 wasn't a marker? How do you feel about it now that you know?

    I think if I started to have symptoms, then I would ask my doctor more about my records. I was just informed now that they will only be taking scans once a year now unless you are symptomatic. Since my surgery in 2010 I was getting one every 6 months.
    I felt a little unnerved by this but when I look back at my history since 2005, all of my scans, whether CT, CTPET, PET, MRI, ultrasound, laparoscopy, XRays, were negative. Go figure.

    Caring thoughts to you!

    Kathy

    CA 125
    I've been following my CA125 numbers all along. From a high of 40 prior to my uterine adenocarcinoma and hysterectomy and a 90 prior to my lung lobectomy/resection, they are now in the 5-7 range for the last 6 months. That said, they just found another spot on my left lung and were talking about a pneumonectomy - removing the left lung - but I said to the referral doctor, but my CA125s are still low - he left the room, then came back with the recommendation to not immediately proceed with the lung surgery, but to have some tests first. If I hadn't known about my CA125s, maybe I would have immediately gone to surgery, and maybe, just maybe, the spot/nodule might have been something else. I think you are your best advocate - and being able to intelligently talk with your current doctor and any referral doctors is in your best interest. How would I feel if the CA125s were shooting up instead? I don't know. We're all different, but I feel like this little bit of knowledge helps me cope...
  • jazzy1
    jazzy1 Member Posts: 1,379
    #4
    barbakamom said:

    CA 125
    I've been following my CA125 numbers all along. From a high of 40 prior to my uterine adenocarcinoma and hysterectomy and a 90 prior to my lung lobectomy/resection, they are now in the 5-7 range for the last 6 months. That said, they just found another spot on my left lung and were talking about a pneumonectomy - removing the left lung - but I said to the referral doctor, but my CA125s are still low - he left the room, then came back with the recommendation to not immediately proceed with the lung surgery, but to have some tests first. If I hadn't known about my CA125s, maybe I would have immediately gone to surgery, and maybe, just maybe, the spot/nodule might have been something else. I think you are your best advocate - and being able to intelligently talk with your current doctor and any referral doctors is in your best interest. How would I feel if the CA125s were shooting up instead? I don't know. We're all different, but I feel like this little bit of knowledge helps me cope...

    Barbakamom
    You seemed to stand up for yourself by suggesting the CA125 and how it was unchanged. You know at times this marker can move upwards without being a recurrence...possible infection your body is fighting.

    My doc relies on this for me as pre-cancer it was 500+ and continually came down after each and every treatment until post-treatments it has stayed around 4-6 range. Doc tells me he can use this marker, as mine showed improvement CONTINUALLY pre-to-post treatments, but with many it's not something to follow.

    We're all individuals, therefore, follow-ups should be as well...
    Jan
  • CindyGSD
    CindyGSD Member Posts: 190
    #5
    Kaleena said:

    Cindy:
    Your response just
    Cindy:

    Your response just got me to thinkng because I too assume that my new doctor hasn't been using the CA125. So as a personal question, if you don't mind me asking, do you think it is better not to know ALL of the details?

    With my new doctor, I haven't seen any of the reports. I know that when my surgery was in February of 2010 one of my lymph nodes were found to have microscopic cells. But I never have seen any reports. I am on a wait and see approach with no treatment required since then. I am to report anything out of the ordinary to him. I have never asked for any of my records from my new doctor and he believes in positive actions and he would answer any questions I would ask him, but I have never asked him those point blank questions. All I know is that if it does come back in the same area, that one of the risks is that I may lose function of my left leg, colostomy, etc.

    Remember,I am only asking this for my own reasoning. Did you feel better knowing that your CA125 wasn't a marker? How do you feel about it now that you know?

    I think if I started to have symptoms, then I would ask my doctor more about my records. I was just informed now that they will only be taking scans once a year now unless you are symptomatic. Since my surgery in 2010 I was getting one every 6 months.
    I felt a little unnerved by this but when I look back at my history since 2005, all of my scans, whether CT, CTPET, PET, MRI, ultrasound, laparoscopy, XRays, were negative. Go figure.

    Caring thoughts to you!

    Kathy

    Hi Kathy...
    I'll have to admit I did feel better knowing that the CA125 was a reliable marker for me, or at least appears to be. Its like one more thing I can rely on and it has made my doctor pretty confident that my CT scan coming up in a few weeks will be good (getting my last round of chemo this week).

    That said, I'm not sure I will feel too good about it if suddenly my numbers start to rise and my CT scan is still clear. How many times have we heard ladies on this very board say that their doctor wants to take a wait and see approach when their numbers start to rise. If thats how its going to be, I could have remained in ignorant bliss until my next CT scan when something did actually show up.

    Only time will tell, but I'm sort of like you. I don't ask too many questions, probably because I don't want to know the answers and I'm no dummy. I don't need everything spelled out for me.

    Sounds like you are doing great! Hopefully I'll get to the point where I can have a year between scans.

    Take care,
    Cindy
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #6
    CindyGSD said:

    Hi Kathy...
    I'll have to admit I did feel better knowing that the CA125 was a reliable marker for me, or at least appears to be. Its like one more thing I can rely on and it has made my doctor pretty confident that my CT scan coming up in a few weeks will be good (getting my last round of chemo this week).

    That said, I'm not sure I will feel too good about it if suddenly my numbers start to rise and my CT scan is still clear. How many times have we heard ladies on this very board say that their doctor wants to take a wait and see approach when their numbers start to rise. If thats how its going to be, I could have remained in ignorant bliss until my next CT scan when something did actually show up.

    Only time will tell, but I'm sort of like you. I don't ask too many questions, probably because I don't want to know the answers and I'm no dummy. I don't need everything spelled out for me.

    Sounds like you are doing great! Hopefully I'll get to the point where I can have a year between scans.

    Take care,
    Cindy

    Ignorant Bliss
    Cindy,

    I mentioned this awhile back so pardon to those who've heard it before. But there IS something to be said about NOT monitoring the numbers. I chose to let the doc do this and remain ignorant. The deal is, I will get the bloodwork and you will monitor and let me know when I need to know. There is research on this (mu doc told me) that showed a better quality of life for those who remained blissfully ignorant.

    Just something to consider. There's a pink page at front of my chart that has this message on it. My doc always comments about it when I see him. :)

    Mary Ann
  • CindyGSD
    CindyGSD Member Posts: 190
    #7
    daisy366 said:

    Ignorant Bliss
    Cindy,

    I mentioned this awhile back so pardon to those who've heard it before. But there IS something to be said about NOT monitoring the numbers. I chose to let the doc do this and remain ignorant. The deal is, I will get the bloodwork and you will monitor and let me know when I need to know. There is research on this (mu doc told me) that showed a better quality of life for those who remained blissfully ignorant.

    Just something to consider. There's a pink page at front of my chart that has this message on it. My doc always comments about it when I see him. :)

    Mary Ann

    Hi Maryann...
    Considering I went through six months of treatment without knowing they were even monitoring my CA125, I think I'm okay with letting them deal with that end going forward and leaving it up to them to tell me when we've got a problem. I like the ideal of being blissfully unaware especially since it seems a reoccurrence is not met with the urgency I would expect it to be until it becomes symptomatic. Not that I won't be expecting updates from my scans, but that fluctuating number sort of scares me.

    Glad I'm not the only one that wants to ignore the numbers.

    Take care,
    Cindy
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    Just to clear the air on Ca125
    it is only helpful as a marker if you have had an elevation. Sorry, I don't know your personal story, but if you had an elevated Ca125 from before your surgery, then following it has relevance. If it was normal before your surgery, then it is not helpful.

    Best to you.
  • jazzy1
    jazzy1 Member Posts: 1,379
    #9
    longtermsurvivor said:

    Just to clear the air on Ca125
    it is only helpful as a marker if you have had an elevation. Sorry, I don't know your personal story, but if you had an elevated Ca125 from before your surgery, then following it has relevance. If it was normal before your surgery, then it is not helpful.

    Best to you.

    Longtermsurvivor
    Bingo!! This is EXACTLY what my doc told me from the start. When I was first diagnosed with cancer he took my CA125 (unknown to me what this marker was used for) which was well over 500. Prior to each chemo my blood was drawn and this marker was followed. It came down consistently after each and EVERY chemo. Post treatments while in NED today it has remained in same range 4-6.

    As doc told me, many of us have a CA125 which just doesn't move, so no relevance for following. Same thing with ovarian cancer, must show movement from the START.

    Can your doc follow this marker on you? Not sure where you are on treatments, etc, but if out of treatments, what type of things does he use during your checkups...CT scan? Follow symptoms?

    This marker I find so very confusing for many, but as we all must remember IT'S ONLY A NUMBER and we're more then a total of numbers....try not to get hooked on this. Love what Mary Ann does, has no need to know each appt, but if changes and she should be advised, then she's fine.

    Happy Friday....
    Jan
  • CindyGSD
    CindyGSD Member Posts: 190
    #10
    jazzy1 said:

    Longtermsurvivor
    Bingo!! This is EXACTLY what my doc told me from the start. When I was first diagnosed with cancer he took my CA125 (unknown to me what this marker was used for) which was well over 500. Prior to each chemo my blood was drawn and this marker was followed. It came down consistently after each and EVERY chemo. Post treatments while in NED today it has remained in same range 4-6.

    As doc told me, many of us have a CA125 which just doesn't move, so no relevance for following. Same thing with ovarian cancer, must show movement from the START.

    Can your doc follow this marker on you? Not sure where you are on treatments, etc, but if out of treatments, what type of things does he use during your checkups...CT scan? Follow symptoms?

    This marker I find so very confusing for many, but as we all must remember IT'S ONLY A NUMBER and we're more then a total of numbers....try not to get hooked on this. Love what Mary Ann does, has no need to know each appt, but if changes and she should be advised, then she's fine.

    Happy Friday....
    Jan

    Thanks
    Well that could be problematic given they never got a number from me before the surgery because the type of cancer they thought I had didn't use a CA125. So I guess its more of an assumption on my doctor's part that it would have been high and was in the normal range after surgery and going forward because she considers me NED from surgery date. Only a reoccurrence will tell me sure and I don't need to know that bad. ;o)

    Cindy
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #11
    CindyGSD said:

    Thanks
    Well that could be problematic given they never got a number from me before the surgery because the type of cancer they thought I had didn't use a CA125. So I guess its more of an assumption on my doctor's part that it would have been high and was in the normal range after surgery and going forward because she considers me NED from surgery date. Only a reoccurrence will tell me sure and I don't need to know that bad. ;o)

    Cindy

    hmmmmm
    I just thought of something. If my cancer morphed from hormone insensitive to hormone sensitive and considering article that JoAnn posted yesterday that even within a single tumor there my be different things going on....then perhaps a cancer can also morph from CA125 insensitive to CA125 sensitive. In that case, I think it should be always checked and trends monitored.

    Mary Ann

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