8 weeks post-chemo, first appt went badly

Jodisgoing180
Jodisgoing180 Member Posts: 97
in Uterine/Endometrial Cancer #1

I am 8 weeks post-treatment for ovarian cancer. I feel great. A few little aches and pains, but other than that nothing. I got my ca-125 count and it's still above normal-- 91. the doctor moved up my pet scan. He sounds really confident, but I have cried the entire time since getting the phone call. Has anyone had an elevated CA125 and it not be cancer?  I never had a normal reading through frontline. 

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    #2
    I am so sorry to hear this,

    I am so sorry to hear this, Jodie.  It's ok to cry.  When is your PET scan scheduled?

  • brissance
    brissance Member Posts: 192
    edited August 2016 #3
    Scary Times

    For Uterine cancer, my doctor does not use the CA 125.  I started reading on it and was going to push to get it.  Anyway, what I read actually supported my doctors belief not to use them.  There are a number of reasons for false positives (if I recall one is infection).  AND at best, the test is nothing but an indicator that you need follow up... not that you have cancer.   I know I would react the same but hopefully I would realize that it is not a diagnosis of anything.  Just need another test.  God bless you.

  • Jodisgoing180
    Jodisgoing180 Member Posts: 97
    #4
    NoTimeForCancer said:

    I am so sorry to hear this,

    I am so sorry to hear this, Jodie.  It's ok to cry.  When is your PET scan scheduled?

    They'll call tomorrow. I don

    They'll call tomorrow. I don't know for sure. 

  • Jodisgoing180
    Jodisgoing180 Member Posts: 97
    #5
    brissance said:

    Scary Times

    For Uterine cancer, my doctor does not use the CA 125.  I started reading on it and was going to push to get it.  Anyway, what I read actually supported my doctors belief not to use them.  There are a number of reasons for false positives (if I recall one is infection).  AND at best, the test is nothing but an indicator that you need follow up... not that you have cancer.   I know I would react the same but hopefully I would realize that it is not a diagnosis of anything.  Just need another test.  God bless you.

    I had/have ovarian cancer. I

    I had/have ovarian cancer. I post here because no one responds there. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #6
    Jodi - You are always welcome

    Jodi - You are always welcome here! I'm so sorry that you are going through this right now. Hopefully your numbers are nothing but an indication of an infection or some other dumb thing. I hope they get you in for your scan asap so that you get some answers. I'm sending you healing vibes and positive energy. Please come back and let us know your outcome.

    Love and Hugs,

    Cindi

  • Editgrl
    Editgrl Member Posts: 903 Member
    #7
    Jodi

    I seem to remember that you have chronic sinus infections or some chronic infection of some sort.  It is possible that that may be keeping the CA-125 elevated.  Other things besides cancer can make your CA-125 rise.  Hoping that you can get that PET scan done ASAP.

    Chris

  • Jodisgoing180
    Jodisgoing180 Member Posts: 97
    edited August 2016 #8
    Editgrl said:

    Jodi

    I seem to remember that you have chronic sinus infections or some chronic infection of some sort.  It is possible that that may be keeping the CA-125 elevated.  Other things besides cancer can make your CA-125 rise.  Hoping that you can get that PET scan done ASAP.

    Chris

    Yes. I was in a train

    Yes. I was in a train accident that damaged my sinuses. I also have residual fluid in my lungs. 

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited August 2016 #9
    beccabtown said:

    CA-125

    I have endometrial cancer, not ovarian, and this is one area where there are some differences between them. But I have recently been reading up on this and have learned that pleural effusion is one of the conditions that can raise CA-125, as can other kinds of infections and inflammation. To the extent that you can, try to focus on the possibility of the most positive outcome for you--and know that if that's not what happens next, you will be able to face whatever does come.

    The reason I've been researching this is that my CA-125 number was very high (I'm not even going to type the number here, but much higher than 90) before my hysterectomy, and I've recently learned that it stayed high at least through my first two rounds of chemo. I have been very upset about this, so I certainly understand how you feel. I'm going to start a separate thread about CA-125 at some point and explain my situation. A couple of things I've learned from reading, though, are that there is a lot of confusion on the part of both doctors and patients about how to use and interpret this test, and that a high result always needs to be followed up with other kinds of tests. I hope you're able to have your PET scan soon and get some more concrete information. Let us know what you find out.

    Hi!

    Love your new picture Becca!That's some really useful information about the CA-125 you posted. Any links to particularly helpful articles you read? 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    #10
    MAbound, here is a link to

    MAbound, here is a link to explain information on CA125.  There was another interesting thread on this board regarind HE4 - that is below the CA125 PDF.

    http://www.foundationforwomenscancer.org/wp-content/uploads/Understanding-CA125-Levels-2015.pdf

    http://csn.cancer.org/node/302682

     

  • brissance
    brissance Member Posts: 192
    #11
    NoTimeForCancer said:

    MAbound, here is a link to

    MAbound, here is a link to explain information on CA125.  There was another interesting thread on this board regarind HE4 - that is below the CA125 PDF.

    http://www.foundationforwomenscancer.org/wp-content/uploads/Understanding-CA125-Levels-2015.pdf

    http://csn.cancer.org/node/302682

     

    Great Info

    Great info.  Read it all.  Thanks for doing that research and sharing.

  • MAbound
    MAbound Member Posts: 1,168 Member
    #12
    NoTimeForCancer said:

    MAbound, here is a link to

    MAbound, here is a link to explain information on CA125.  There was another interesting thread on this board regarind HE4 - that is below the CA125 PDF.

    http://www.foundationforwomenscancer.org/wp-content/uploads/Understanding-CA125-Levels-2015.pdf

    http://csn.cancer.org/node/302682

     

    Thanks

    I printed out that article and put it with my lab records because I'm sure my husband will find it interesting reading, too, and it will help him to keep his cool if the numbers jump around as time progresses. That's so important!

    I posted on the HE-4 thread because I was asking my gyn-onc why he doesn't do that one. Just goes to show there's more progress to be made regarding this complicated cancer.

  • beccabtown
    beccabtown Member Posts: 234
    #13
    NoTimeForCancer said:

    MAbound, here is a link to

    MAbound, here is a link to explain information on CA125.  There was another interesting thread on this board regarind HE4 - that is below the CA125 PDF.

    http://www.foundationforwomenscancer.org/wp-content/uploads/Understanding-CA125-Levels-2015.pdf

    http://csn.cancer.org/node/302682

     

    Thanks for posting the

    Thanks for posting the Foundation for Women's Cancer article. It included some of the information I've been looking for.

     

  • Jodisgoing180
    Jodisgoing180 Member Posts: 97
    #14
    NoTimeForCancer said:

    MAbound, here is a link to

    MAbound, here is a link to explain information on CA125.  There was another interesting thread on this board regarind HE4 - that is below the CA125 PDF.

    http://www.foundationforwomenscancer.org/wp-content/uploads/Understanding-CA125-Levels-2015.pdf

    http://csn.cancer.org/node/302682

     

    Thank-you. I slept on it, and

    Thank-you. I slept on it, and I figure there is no reason to panic yet. 

  • beccabtown
    beccabtown Member Posts: 234
    edited August 2016 #15
    CA-125

    I have endometrial cancer, not ovarian, and this is one area where there are some differences between them. But I have recently been reading up on this and have learned that pleural effusion is one of the conditions that can raise CA-125, as can other kinds of infections and inflammation. To the extent that you can, try to focus on the possibility of the most positive outcome for you--and know that if that's not what happens next, you will be able to face whatever does come.

    The reason I've been researching this is that my CA-125 number was very high (I'm not even going to type the number here, but much higher than 90) before my hysterectomy, and I've recently learned that it stayed high at least through my first two rounds of chemo. I have been very upset about this, so I certainly understand how you feel. I'm going to start a separate thread about CA-125 at some point and explain my situation. A couple of things I've learned from reading, though, are that there is a lot of confusion on the part of both doctors and patients about how to use and interpret this test, and that a high result always needs to be followed up with other kinds of tests. I hope you're able to have your PET scan soon and get some more concrete information. Let us know what you find out.

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