Rise in CA125 but CT scan shows everything has reduced

Tina Brown
Tina Brown Member Posts: 1,036 Member
edited March 2011 in Ovarian Cancer #1
I went to see my oncologist for my CA125 results from #4 and my CT scan. He began by saying that it is good news. The fluid around my lungs is very small now and had reduced considerably from the previous scan. I had a soft tissue cyst in my pelvic area that had reduced in size by half. All other major organs completely clear. I was really happy and reassured. He was really pleased with it and wasn't worried at all.

HOWEVER, my CA125 had risen from 161 to 389????????????????

My doctor was very confused as they should either go up or down TOGETHER. I had the blood test before the scan so none of it made any sense.

Has anyone else experienced this?

He ordered another blood test to confirm the results but he said if my numbers have risen it would mean I was resistent to the chemo and I need to switch to a different one.

I get the new blood results on Monday (2 days) so I am hoping for a drop.

Tina

Comments

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    hoping for a drop too
    will keep my fingers crossed for you that your numbers are way down. Keep us posted ..val
  • Cindy Bear
    Cindy Bear Member Posts: 569

    hoping for a drop too
    will keep my fingers crossed for you that your numbers are way down. Keep us posted ..val

    that is puzzling
    but we'll go with the good news of a clean scan and run with that.. Are you feeling well? That's the important thing... Take care and keep us posted.
    Hugs,
    Cindy
  • kayandok
    kayandok Member Posts: 1,202 Member
    Great news
    on the scan! So happy for you! Maybe the CA is no longer a good marker for you.
    k
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    kayandok said:

    Great news
    on the scan! So happy for you! Maybe the CA is no longer a good marker for you.
    k

    A scan can't lie? I hope I
    A scan can't lie? I hope I am right in saying this, however from what I have read on here ca125 can rise for different reasons? Try not to panic Tina, let us know tomorrow what the outcome is.
    You may well have seen I was away last week skiing, I actually went a day without thinking about cancer, the following day at the top of the mountain it hit me I hadn't thought of the beast and the devastation it causes, I felt guilty, anyway I said a prayer at the top of that mountain, it is hauntingly beautiful and silent up there , I prayed for mum and all the women on this board, for their good health. Please god hear my prayer.
  • LaundryQueen
    LaundryQueen Member Posts: 676

    A scan can't lie? I hope I
    A scan can't lie? I hope I am right in saying this, however from what I have read on here ca125 can rise for different reasons? Try not to panic Tina, let us know tomorrow what the outcome is.
    You may well have seen I was away last week skiing, I actually went a day without thinking about cancer, the following day at the top of the mountain it hit me I hadn't thought of the beast and the devastation it causes, I felt guilty, anyway I said a prayer at the top of that mountain, it is hauntingly beautiful and silent up there , I prayed for mum and all the women on this board, for their good health. Please god hear my prayer.

    Not reliable
    Tina

    You are an example of the unreliability of the blood test CA-125 as a marker for ovarian cancer. In my opinion, there is probably inflammation that is going along with your healing process and YOU ARE RESPONDING to the chemo. CA-125 elevates with inflammation. I am so happy to hear that the fluid around your lungs is clearing. That mean A LOT.

    Trust the scan and know that you are healing.
  • LaundryQueen
    LaundryQueen Member Posts: 676

    A scan can't lie? I hope I
    A scan can't lie? I hope I am right in saying this, however from what I have read on here ca125 can rise for different reasons? Try not to panic Tina, let us know tomorrow what the outcome is.
    You may well have seen I was away last week skiing, I actually went a day without thinking about cancer, the following day at the top of the mountain it hit me I hadn't thought of the beast and the devastation it causes, I felt guilty, anyway I said a prayer at the top of that mountain, it is hauntingly beautiful and silent up there , I prayed for mum and all the women on this board, for their good health. Please god hear my prayer.

    Sorry
    Double posted!
  • Christine B.
    Christine B. Member Posts: 137
    Hoping for a drop too!
    Tina, I'm glad to hear about your CT scan results! I'm hoping the numbers drop for you, it does seem like the chemo is working with your CT scan results, so I wonder why the doctor would think you were resistant. Please keep us posted.
    Christine
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412

    Hoping for a drop too!
    Tina, I'm glad to hear about your CT scan results! I'm hoping the numbers drop for you, it does seem like the chemo is working with your CT scan results, so I wonder why the doctor would think you were resistant. Please keep us posted.
    Christine

    Good luck.
    Thinking of you today xxx
  • azgrandma
    azgrandma Member Posts: 609 Member

    Good luck.
    Thinking of you today xxx

    Praying
    I am praying fo ryou honey
    God Bless you
    Hugs Lynda
  • kikz
    kikz Member Posts: 1,345 Member
    azgrandma said:

    Praying
    I am praying fo ryou honey
    God Bless you
    Hugs Lynda

    Great news on scan
    and I hope it will follow for the CA 125.

    Karen
  • Rookerbird
    Rookerbird Member Posts: 100
    Same Thing...CT and CA-125 Not Trending Together
    Tina - The same thing happened to me last week. My CT showed significant reduction in tumor size, but my CA-125 went up. My doctor was ecstatic about the CT results, and definitely wants to continue with Doxil.

    His plan is to continue with monthly CA-125 checks and just watch that, plus have a CT every 3 months.

    -Kathy
  • anicca
    anicca Member Posts: 334 Member

    Same Thing...CT and CA-125 Not Trending Together
    Tina - The same thing happened to me last week. My CT showed significant reduction in tumor size, but my CA-125 went up. My doctor was ecstatic about the CT results, and definitely wants to continue with Doxil.

    His plan is to continue with monthly CA-125 checks and just watch that, plus have a CT every 3 months.

    -Kathy

    When I asked about my CA-125
    When I asked about my CA-125 last week, my doctor didn't seem that interested himself, but acknowledged that it's what everyone wants to know. He clearly does not think it's very reliable, at least by itself. A good CT is definite!
  • eward
    eward Member Posts: 210
    ca125
    Other cancers don't have this test. I guess sometimes it is a blessing and sometimes a curse to know of the fluctuations of the CA125.

    My mom's CA125 has been stable between approx. 2000 and 2500 for a year now. She has been in chemo non-stop, but has been tolerating it well thus far. My mom is amazing. She walks on her treadmill(maybe not as fast as she used to but she still tries), cooks wonderful meals for she and my dad almost every day, occasionally babysits for the grandkids, and goes on vacations once in a while. Like many of you, she finds some way to put statistics and tests out of her mind at times so she can keep living! Some days are easier than others.

    She has had a significant spread to breast tissue over time, which is not being dealt with specifically because the breast tissue is not a "life threatening" area of her body, and because they don't want to do more harm with surgery. Her CA125 had been inching down the past few months (which was so promising) and then the last test showed "over 2500"- I guess this particular lab doesn't report specific values above 2500. So we are left to wonder how to read that report until the results from tomorrow's CT Scan. So keep mom in your prayers for a good CT Scan result.

    Tina, I think the CT scan and your clear lungs are the key things to think of right now. Plus, I also think you have been feeling good, same as my mom. That is gold.
    xoxo
    Eileen
  • childofthestars
    childofthestars Member Posts: 251 Member
    CA125
    Hi Tina
    This is the problem with the CA125 test. My oncologist really doesn't take this test as a reliable marker, in fact I don't have a regular CA125 (apart from when i was having chemo). His view is that as long as you remain asymptomatic there's not much point in doing the test. However, it is my choice!!!
    Brilliant news about the CT scan tho.
    keep us up to date.
    Michelle x
  • lulu1010
    lulu1010 Member Posts: 367
    Great news on the CT scan....
    Tina, I recently had a CA-125 that was elevated and it didnt make sense and the oncologist told me the test was "dilutional" making it open for lab error. Sure enough, when repeated, it had gone down. I know how worried I was the whole time I waited for the redo but try to focus on the good CT scan for now.

    Keeping you in my prayers!
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    lulu1010 said:

    Great news on the CT scan....
    Tina, I recently had a CA-125 that was elevated and it didnt make sense and the oncologist told me the test was "dilutional" making it open for lab error. Sure enough, when repeated, it had gone down. I know how worried I was the whole time I waited for the redo but try to focus on the good CT scan for now.

    Keeping you in my prayers!

    Good news
    Thank you to everyone for your advise and warm wishes.

    I had my CA125 repeated and surely enough the numbers came down from 389 to 211 so breathed a sign of relief. Therefore I received my last chemo yesterday - yipee. The lovely chemo nurse said it is quite common for the CA125 to fluctuate when the treatment is nearing the end as it doesn't have the same impact on the cancer. I was pleased to be able to finish the treatment eventhough I know I am going to feeling yukky for the next week.

    I agree with all of your comments about the CT being a much more relable indicator of this beast. It is so nice to hear about everyone else'sexperiences as you don't feel quiteso alone. I have an amazing support network here at home but NONE of them really understand what I am going through.

    My oncologist did suggest that when I need to have chemo again he will try me on Topetecan as I didn't tolerate doxil very well.

    Many thanks again for all of your support Tina xx
  • Rookerbird
    Rookerbird Member Posts: 100

    Good news
    Thank you to everyone for your advise and warm wishes.

    I had my CA125 repeated and surely enough the numbers came down from 389 to 211 so breathed a sign of relief. Therefore I received my last chemo yesterday - yipee. The lovely chemo nurse said it is quite common for the CA125 to fluctuate when the treatment is nearing the end as it doesn't have the same impact on the cancer. I was pleased to be able to finish the treatment eventhough I know I am going to feeling yukky for the next week.

    I agree with all of your comments about the CT being a much more relable indicator of this beast. It is so nice to hear about everyone else'sexperiences as you don't feel quiteso alone. I have an amazing support network here at home but NONE of them really understand what I am going through.

    My oncologist did suggest that when I need to have chemo again he will try me on Topetecan as I didn't tolerate doxil very well.

    Many thanks again for all of your support Tina xx

    Ringing a Bell for Tina's News
    Woohoo! Your CA-125 is DOWN!
    Cheers to your last chemo yesterday!
    This news made me SMILE...so happy for you!

    -Kathy
  • Mwee
    Mwee Member Posts: 1,338

    Good news
    Thank you to everyone for your advise and warm wishes.

    I had my CA125 repeated and surely enough the numbers came down from 389 to 211 so breathed a sign of relief. Therefore I received my last chemo yesterday - yipee. The lovely chemo nurse said it is quite common for the CA125 to fluctuate when the treatment is nearing the end as it doesn't have the same impact on the cancer. I was pleased to be able to finish the treatment eventhough I know I am going to feeling yukky for the next week.

    I agree with all of your comments about the CT being a much more relable indicator of this beast. It is so nice to hear about everyone else'sexperiences as you don't feel quiteso alone. I have an amazing support network here at home but NONE of them really understand what I am going through.

    My oncologist did suggest that when I need to have chemo again he will try me on Topetecan as I didn't tolerate doxil very well.

    Many thanks again for all of your support Tina xx

    Great news
    I'm so happy to hear about your CT scan and congrats on your last Doxil!... that's no easy feat... been there.

    I too feel that the love and support that I find here helps me feel less alone with the beast. I sometimes think that I'd think I was crazy without the understanding from the support network we have right here.
    (((HUGS))) Maria