Elevated CA-125

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hope67
hope67 Member Posts: 181

Hi all!

I just found out today that I have elevated CA-125 levels. CA-125 is a tumour marker for ovaries. My level is 86, normal values are under 35. I am on Tamoxifen and had my regular gyn US two days ago and my doctor found 2 cysts, so that's the reason she reffered me to make CA-125. I will see my onco on Monday and I am worried that he will suggest ovaries removal and hysterectomy. Which of course I am not thrilled about.

Just wanted to hear if anyone had similar experience and what did you do.

 

All the best, Carmen

 

 

Comments

  • Desmonds1
    Desmonds1 Member Posts: 54 Member
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    Hi Carmen
    i just had a total

    Hi Carmen

    i just had a total hysterectomy about 2weeks ago- all went smoothly-

    Wishing you well-

    Susan

  • camul
    camul Member Posts: 2,537
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    My doctor usually waits and does a second one.
    My first onco did the ca125. My current one does ca 29. Last month my tumor marker was up again, it was good for two months. First time ever! He repeated the tumor marker Tuesday and will follow it up with new scans to see if the Aromason is still working
    My first onco only did tumor marker tests once a year because he said there are too many false negs and pos. My current one only uses them as a guide to see is meds are working. He also said he does not diagnose with tumor markers, they are only a guide.
    I had a complete hysterectomy at 30. It was pretty smooth.
    Hopefully they will find something other than cancer that is causing the numbeers to be elevated.
    I wish you the best with the onco visit.
    Carol
  • hope67
    hope67 Member Posts: 181
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    Thanks
    Thanks for your answers. I saw my oncologist yesterday and he referred me to an onco gynecologist and I'll have appointment on next Monday. I know it can be a false positive regarding that I have cysts on my ovaries, probably from Tamoxifen, but I know that it can mean a lot of other stuff, too. I was freaking out for awhile, but am pretty much calm now. Trying not to think too much :)

    Carmen
  • VickiSam
    VickiSam Member Posts: 9,079 Member
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    hope67 said:

    Thanks
    Thanks for your answers. I saw my oncologist yesterday and he referred me to an onco gynecologist and I'll have appointment on next Monday. I know it can be a false positive regarding that I have cysts on my ovaries, probably from Tamoxifen, but I know that it can mean a lot of other stuff, too. I was freaking out for awhile, but am pretty much calm now. Trying not to think too much :)

    Carmen

    Carmen ..

    Freakin out would be a normal emotion in my book.  Hoping you have answers - soon.

    Please keep us updated, as time permits.

    Strength, Courage and HOPE for a Cure.

    Vicki Sam

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    VickiSam said:

    Carmen ..

    Freakin out would be a normal emotion in my book.  Hoping you have answers - soon.

    Please keep us updated, as time permits.

    Strength, Courage and HOPE for a Cure.

    Vicki Sam

    Hysterectomy, etc.

    Hi Carmen-

    CA 125 is also a marker for one type of endometral cancers (UPSC - uterine papillary serious carcinoma).  This one acts like ovarian cancer and CA 125 is often helpful in watching out for it, too.  Glad you're seeing a gyn-oncologist.  I was recently kicked to the curb (hooray) by my gyn/onc after 5 years post endometrial cancer (not the type that CA 125 can be useful for).  I had a complete hysterectomy, including ovaries and fallopian tubes, and lymph node removal 5 years ago.  I had robotic assisted surgery and the recovery was amazing.  While I hope you do not have to have a hysterectomy, the procedure itself is really not bad at all, even if it's done as an open surgery (at least that's what I've been told).  I was already 5 years post menopausal, so the loss of my ovaries was uneventful to me.  Hope all goes well for you next week and the elevation turns out to be a fluke.  Please report back after your visit.

    Suzanne

  • lintx
    lintx Member Posts: 697
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    Hysterectomy, etc.

    Hi Carmen-

    CA 125 is also a marker for one type of endometral cancers (UPSC - uterine papillary serious carcinoma).  This one acts like ovarian cancer and CA 125 is often helpful in watching out for it, too.  Glad you're seeing a gyn-oncologist.  I was recently kicked to the curb (hooray) by my gyn/onc after 5 years post endometrial cancer (not the type that CA 125 can be useful for).  I had a complete hysterectomy, including ovaries and fallopian tubes, and lymph node removal 5 years ago.  I had robotic assisted surgery and the recovery was amazing.  While I hope you do not have to have a hysterectomy, the procedure itself is really not bad at all, even if it's done as an open surgery (at least that's what I've been told).  I was already 5 years post menopausal, so the loss of my ovaries was uneventful to me.  Hope all goes well for you next week and the elevation turns out to be a fluke.  Please report back after your visit.

    Suzanne

    Hi Carmen

    I had a hysterectomy in my 40's, and it was an easy surgery. I know exactly what you mean about worry though.  My worry is always what Tamoxifen can be be doing to my body.  I'm 1/2 way through it.  Please keep in touch. I wish you well. Hugs, Linda

  • VickiSam
    VickiSam Member Posts: 9,079 Member
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    lintx said:

    Hi Carmen

    I had a hysterectomy in my 40's, and it was an easy surgery. I know exactly what you mean about worry though.  My worry is always what Tamoxifen can be be doing to my body.  I'm 1/2 way through it.  Please keep in touch. I wish you well. Hugs, Linda

    Carmen ..

    Thinking about you ..  Please post an update when possible.

     

    Vicki SamEmbarassed

  • hope67
    hope67 Member Posts: 181
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    Hi,

    Thank you for thinking of me.

    I saw the onco gynecologist today. She made an US and the cysts have schrunk. But my CA-125 levels almost doubled, they are 140 now. She said she will check on me for the next two months and then we will see. But I am pretty much freaking out right now. I found some articles on the net that elevated CA-125 in breast cancer can mean metastatic disease. I know I shouldn't google.I feel just like I've felt two years ago, so frightened and very lonely. This is just so hard.

    Carmen

  • New Flower
    New Flower Member Posts: 4,294
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    hope67 said:

    Hi,

    Thank you for thinking of me.

    I saw the onco gynecologist today. She made an US and the cysts have schrunk. But my CA-125 levels almost doubled, they are 140 now. She said she will check on me for the next two months and then we will see. But I am pretty much freaking out right now. I found some articles on the net that elevated CA-125 in breast cancer can mean metastatic disease. I know I shouldn't google.I feel just like I've felt two years ago, so frightened and very lonely. This is just so hard.

    Carmen

    Positive thoughts and hugs are coming your way

    send you hugs

  • lintx
    lintx Member Posts: 697
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    hope67 said:

    Hi,

    Thank you for thinking of me.

    I saw the onco gynecologist today. She made an US and the cysts have schrunk. But my CA-125 levels almost doubled, they are 140 now. She said she will check on me for the next two months and then we will see. But I am pretty much freaking out right now. I found some articles on the net that elevated CA-125 in breast cancer can mean metastatic disease. I know I shouldn't google.I feel just like I've felt two years ago, so frightened and very lonely. This is just so hard.

    Carmen

    Please don't feel lonely, Carmen!

    Everyone is here for you, so please talk to us often.  I remember when you first signed in on this site.  You're right that we shouldn't google too much, but it's hard not to check things out.  We're women, afterall!!  You are in my prayers.  Linda