Is this the start of a recurrence?

beccabtown
beccabtown Member Posts: 234
in Uterine/Endometrial Cancer #1

Found out today that my CA-125 has jumped from 11 six weeks ago to 57 this week (now six months since the end of chemo). I'm not entirely surprised, since I've been feeling like something wasn't right. So now I'm waiting to find out when my CT scan will be. I had a scan just three months ago and it showed no cause for concern.

My question is whether anyone has had a post-chemo spike in the CA-125 that did not turn out to be a recurrence of cancer. Anyone?

On top of everything else, a beloved uncle just died of PTLD, a rare kind of lymphoma that develops after a transplant and progresses very quickly. I visited him in hospice a week ago. It was scary and in some ways strangely reassuring. But not by much.

 

Comments

  • derMaus
    derMaus Member Posts: 558 Member
    #2
    Oh Becca, I'm so sorry to

    Oh Becca, I'm so sorry to hear about your uncle and your CA-125 rise. I can only offer heartfelt sympathy about the former, but have no insight on the later. My question would be if you had a high CA-125 at diagnosis? I do know it's not a good indicator for many of us, but still can be for a some. I also know it can be caused by *any* inflamation, not just cancer, which complicates things. If it's any consolation, my CA-125 was 110 at diagnosis and was 8 last week - and I had post-chemo growth in my lymph nodes, so clearly it ain't worth much for me. I hope that it's similarly unreliable for you.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #3
    Becca, I agree with derMaus

    Becca, I agree with derMaus on the CA-125 and think a CT will be helpful in finding out what is going on.  As for your uncle, I am so sorry to hear about your loss.  Please, let us know what you find out.

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #4
    Dear Becca

    I'm hoping with every bit of my being that there is an innocent explanation for your CA125 rise. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #5
    Becca, so sorry for your loss

    Becca, so sorry for your loss. :-(

    My CA125 has been climbing over the last 4 months. However, it was only 22 with cancer and went down to 13 after chemo. Last checkup it was at 28. Sure messes with the mind! But, so far my doctor isn't concerned. I hope yours is because of some other issue! I'm sure you can't get that scan fast enough! Please come back and let us know. Sending you loads of support.

    Love and Hugs,

    Cindi

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #6
    So sorry

    so sorry for the loss of your uncle.

    CA125 is not a good measure for everyone and there are many things that can cause it to rise that have nothing to do with cancer, but by now we are all worriers. The CT scan will tell you more.  Hope everything is clear.

    Hugs and prayers, Lou Ann

  • Nellasing
    Nellasing Member Posts: 528 Member
    #7
    Becca

    so sorry about your uncle!  I know that has to be so difficult.  I hope you get some answers to put your mind at ease- this stuff is just like sticky fly paper!  (((HUGS)))

  • Soup52
    Soup52 Member Posts: 908 Member
    #8
    I'm sorry about the rise, but

    I'm sorry about the rise, but hopefully the Ct will give you answers.

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #9

    Remember that infections in general can raise the CA-125. It doesn't necessarily point to a recurrence. Stay hopeful about this just being something mundane. My condolences on the loss of your Uncle.

  • Carpit
    Carpit Member Posts: 19
    #10
    Don't think you should put

    Don't think you should put too much stock in the rise and fall of C125 test. Mine are all over the place. Found out today that I have an inoperable recurrence in my abdominal area and my C125 was at it's lowest.  

    wishing you the very very best. 

     

  • MAbound
    MAbound Member Posts: 1,168 Member
    #11
    I think the only way to cope

    I think the only way to cope with this constant fear we live with post treatment is to do anything we can to forget we have/had cancer for however long we can manage to do so. Don't think about it unless you absolutely have to, like when you have to go have a test or see the doctor. I've been trying to follow Eldri's example in that respect and am working hard at just living my life as busy as I can handle and unfortunately that means I've been avoiding looking at this forum too often. I'm feeling kind of guilty about that, but right now it's the right thing for me. As time progresses and I gain some confidence that maybe I actually have a longer future than I thought I was going to have after my diagnosis, then perhaps I can spend more time here helping others as I was helped during my treatment.

    That CA-125 is something to ignore, if you can get yourself to, unless there's anything else going on to go with it. It's just not a reliable marker and in all likelihood is inflammation from something else like good old arthritis at our age or even your body's response to the sorrow you are experiencing at the loss of your uncle. So sorry to hear about that and I'm sending you a big, big mental hug right now! It really hits us harder now when we lose someone we care about to cancer, doesn't it? I'm sure it meant a lot to your uncle to have you there.  

    It's so easy to jump to the conclusion that any odd or ill feeling is a return of the cancer. All the twinges and stabbing pains, etc. make me absolutely mental, but so far they are turning out to be leftovers from surgery, chemo, or radiation. The adhesions, vaginal dryness, neurogenic bowel, etc. are all just little gifts from treatment that keep on giving! They put our fears back in our face each time they occur. I find that I have to actively ignore them between checkups and so far so good, but I hate them.

    Hang in there Becca and try not to obsess about the possibility of recurrence unless it's a  certainty. Easier said than done, I know, but it is possible if you make the decision to do so and work at getting on with your life in spite of how it's different from what it was before. You're such a strong person. Thanks for sharing what's going on with you. 

  • derMaus
    derMaus Member Posts: 558 Member
    #12
    Well said, for all of us.

    Well said, for all of us. Thank you.

  • beccabtown
    beccabtown Member Posts: 234
    #13
    Thanks for all the thoughts and suggestions

    Thanks for all the kind words and for helping put things in perspective. I'm still waiting to find out when the CT scan will be. In the meantime, I'm feeling more aches and pulling in the front of my abdomen, something that started before I knew my CA-125 had risen. Of course my mind immediately goes to peritoneal metastases--which, in case you haven't read up on them, mean a very poor prognosis.

    I've been a bit of a hypochondriac all my life, and seeing a doctor or having some test done has usually been enough to get rid of any symptoms (until I got cancer, that is). So I hope the same pattern holds this time.

    Meanwhile, I think I will try to follow MAbound's advice and not think about having cancer until I have more information. If I can't do that, I will see if maybe *acting* like I don't have cancer has the same effect.

    After my treatment both of my oncologists told me CA-125 was a good indicator for me. I guess we shall see.

    Wishing you all good times and peace of mind!

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    edited June 2017 #14
    Carpit said:

    Don't think you should put

    Don't think you should put too much stock in the rise and fall of C125 test. Mine are all over the place. Found out today that I have an inoperable recurrence in my abdominal area and my C125 was at it's lowest.  

    wishing you the very very best. 

     

    Carpit

    I'm so sorry. Do you have another plan yet?

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #15
    MAbound said:

    I think the only way to cope

    I think the only way to cope with this constant fear we live with post treatment is to do anything we can to forget we have/had cancer for however long we can manage to do so. Don't think about it unless you absolutely have to, like when you have to go have a test or see the doctor. I've been trying to follow Eldri's example in that respect and am working hard at just living my life as busy as I can handle and unfortunately that means I've been avoiding looking at this forum too often. I'm feeling kind of guilty about that, but right now it's the right thing for me. As time progresses and I gain some confidence that maybe I actually have a longer future than I thought I was going to have after my diagnosis, then perhaps I can spend more time here helping others as I was helped during my treatment.

    That CA-125 is something to ignore, if you can get yourself to, unless there's anything else going on to go with it. It's just not a reliable marker and in all likelihood is inflammation from something else like good old arthritis at our age or even your body's response to the sorrow you are experiencing at the loss of your uncle. So sorry to hear about that and I'm sending you a big, big mental hug right now! It really hits us harder now when we lose someone we care about to cancer, doesn't it? I'm sure it meant a lot to your uncle to have you there.  

    It's so easy to jump to the conclusion that any odd or ill feeling is a return of the cancer. All the twinges and stabbing pains, etc. make me absolutely mental, but so far they are turning out to be leftovers from surgery, chemo, or radiation. The adhesions, vaginal dryness, neurogenic bowel, etc. are all just little gifts from treatment that keep on giving! They put our fears back in our face each time they occur. I find that I have to actively ignore them between checkups and so far so good, but I hate them.

    Hang in there Becca and try not to obsess about the possibility of recurrence unless it's a  certainty. Easier said than done, I know, but it is possible if you make the decision to do so and work at getting on with your life in spite of how it's different from what it was before. You're such a strong person. Thanks for sharing what's going on with you. 

    MABound

    So good to hear from you. I've missed your informative posts. As you get on with your life, I hope you will continue to drop by every now and then. 

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