Terrifying news: my CA-125 went up to 154!! They are calling for hurry-up CT-scan to see if my canc

lindaprocopio
lindaprocopio Member Posts: 1,980
edited March 2014 in Uterine Cancer #1
What can I say? I'm devastated. My oncologist even apologized for giving me the news over the phone. The man who thought he 'cured' me yesterday clearly thinks otherwise today. I am still in shock. They'll be calling me with an appointment for a CT-scan within the next couple of days and then my chemo-onc wants to see me to review the scan. ARGH!!!

I'm trying not to freak out until I have something more reliable than a CA-125 confirm that I am in trouble again.

trying not to cry....
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Comments

  • cleo
    cleo Member Posts: 144
    Ro10 said:

    Linda I am so sorry to hear your news
    That certainly is not the news you wanted to hear. Hope the CAT scan does not show any new growth. I will keep the prayers coming for you.

    I go to the doctor tomorrow to see what my latest CA 125 was and what the CAT scan showed. I am hoping for no evidence of disease. In peace and caring.

    CA125
    Linda...don't cry.....all it does is puffy eyes and a stuffed nose. Be angry and determined that everything is going to be fine and that this is one of those abberations that can happen.
    Am thinking of you and sending all positive thoughts and vibes your way.
  • kkstef
    kkstef Member Posts: 688
    It's OK to Cry!!
    Linda....I am so sorry to hear about the results of your CA-125 and will pray that this is a false alarm! We all know that CA-125's are not always reliable and are counting on that being being true for you. You are such a postive person and have provided encouragement and hope to so many of us....and now you need to know that we are here for YOU! I understand why you feel like crying and that is o.k.!!

    HUGE HUGS to you!!!!

    Karen
  • Songflower
    Songflower Member Posts: 608
    Your news
    I am so upset! We have to wait for the scan. My Gyn Onc told me that CA125 elevation means it is spreading in the peritoneum. They do a procedure surgically involving stripping the peritoneum that rids it of the cancer and then healthy tissue grows back. My prayers and hopes are with you. I hate tumor markers. In many ways they are torture markers. With serous they are not always accurate. There is still hope. If you need to cry we are here.

    Diane
  • Your news
    I am so upset! We have to wait for the scan. My Gyn Onc told me that CA125 elevation means it is spreading in the peritoneum. They do a procedure surgically involving stripping the peritoneum that rids it of the cancer and then healthy tissue grows back. My prayers and hopes are with you. I hate tumor markers. In many ways they are torture markers. With serous they are not always accurate. There is still hope. If you need to cry we are here.

    Diane

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  • unknown said:

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  • fuzzytrouble
    fuzzytrouble Member Posts: 212
    Scary
    Hey Linda, I certainly know just what you are feeling like most of us here, I can't stand the waiting to find out because our brain is on over drive now and will not stop until you hear the words "nothing to worry about". Your body goes through so much and is still healing from our treatments so please try to not think the worst until you hear it from the doctor's mouth. Our lymph nodes or lack of them can cause a lot of pain and symptoms if fluid gets backed up and boy it has happened to me in my left leg a couple of times. My good vibes are being sent your way.

    Big, big hug for you from Oregon,
    Sharon
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Scary
    Hey Linda, I certainly know just what you are feeling like most of us here, I can't stand the waiting to find out because our brain is on over drive now and will not stop until you hear the words "nothing to worry about". Your body goes through so much and is still healing from our treatments so please try to not think the worst until you hear it from the doctor's mouth. Our lymph nodes or lack of them can cause a lot of pain and symptoms if fluid gets backed up and boy it has happened to me in my left leg a couple of times. My good vibes are being sent your way.

    Big, big hug for you from Oregon,
    Sharon

    Thanks everyone; I'm over the initial shock now.
    I never did get to cry because I only had to look at my husband's face and I knew he'd lose it if I cried. He didn't even eat any dinner. So I downplayed the whole thing and worked at convincing him how imperfect the marker is, and that it was premature to start grieving about a recurrance. Meanwhile my DIL who is a CT-technician at the hospital where I go, checked to see if the order was in yet for my scan. It was, so she's scheduling me for Friday and is doing the scan herself. She;s bringing the barium home for me tomorrow so i can fast and be ready for the scan on Friday. Although her 'reading' of my scan as it happens isn't official, she'll be able to tell me if she sees anything as soon as I come off the table. & she's good and I think she can read a scan as good as any doctor. So at least I won't be WAITING all weekend for some kind of news.

    I already had a regularly-scheduled 3-month appointment with my new gyn-onc on Wednesday (when I had HOPED tp be home baking pumpkin pies!), so he will be able to give me his recommendations based on my new CT-scan and a pelvic exam and PAP that I know that he will do that day/ & my chemo-onc said he'd also be scheduling me for a consultation again next week after my CT-scan results come in. So it looks to be crazy for a bit until they get to the bottom of this.

    Thanks for all your reasurrances. Deep breath.
  • thank you
    thank you Member Posts: 77

    Thanks everyone; I'm over the initial shock now.
    I never did get to cry because I only had to look at my husband's face and I knew he'd lose it if I cried. He didn't even eat any dinner. So I downplayed the whole thing and worked at convincing him how imperfect the marker is, and that it was premature to start grieving about a recurrance. Meanwhile my DIL who is a CT-technician at the hospital where I go, checked to see if the order was in yet for my scan. It was, so she's scheduling me for Friday and is doing the scan herself. She;s bringing the barium home for me tomorrow so i can fast and be ready for the scan on Friday. Although her 'reading' of my scan as it happens isn't official, she'll be able to tell me if she sees anything as soon as I come off the table. & she's good and I think she can read a scan as good as any doctor. So at least I won't be WAITING all weekend for some kind of news.

    I already had a regularly-scheduled 3-month appointment with my new gyn-onc on Wednesday (when I had HOPED tp be home baking pumpkin pies!), so he will be able to give me his recommendations based on my new CT-scan and a pelvic exam and PAP that I know that he will do that day/ & my chemo-onc said he'd also be scheduling me for a consultation again next week after my CT-scan results come in. So it looks to be crazy for a bit until they get to the bottom of this.

    Thanks for all your reasurrances. Deep breath.

    You had diarrhea the last
    You had diarrhea the last days isnt'it? And we know from other women that any inflammation can cause the ca 125 to rise.
    Remember: my mom had an MRI 6 months after she completed the treatment which showed a suspicious lesion. PET scan confirmed that this is active. Everybody was sure that this is a recurrence. Had a 2nd surgery and all that the surgeon saw was inflammation. I was reading that you can have post-radiation inflammation for up to a year after you complete treatment.
    This is JUST A NUMBER. As a physician - but not an oncologist, I know that we never believe only in numbers.
  • thank you said:

    You had diarrhea the last
    You had diarrhea the last days isnt'it? And we know from other women that any inflammation can cause the ca 125 to rise.
    Remember: my mom had an MRI 6 months after she completed the treatment which showed a suspicious lesion. PET scan confirmed that this is active. Everybody was sure that this is a recurrence. Had a 2nd surgery and all that the surgeon saw was inflammation. I was reading that you can have post-radiation inflammation for up to a year after you complete treatment.
    This is JUST A NUMBER. As a physician - but not an oncologist, I know that we never believe only in numbers.

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  • california_artist
    california_artist Member Posts: 816 Member
    Linda, just wait a minute
    Hey, there Girlique,

    Let's make believe that this report is not your's, but someone else's on the board for just a moment. Now, take a deep breath, and think what would your heart tell you to tell them? Wouldn't the first thing you do be to reassure them that there are other reasons than a recurrence of cancer for the CA-125 to be elevated??? Wouldn't you tell them to try not to panic til other results are in, well, wouldn't you??? Well, Linda, dear heart, take your own best comforting advice for a little while, I know other's here have, chase the fear out of your mind, and have some tea and hug the nearest person very, very, tightly. don't do this if you are using a laptop on train.

    I simply find it hard to believe that with only microscopic cells found in one node and all that you've gone through to get rid of any remaining cancer, that it has returned and so quickly.

    Love you to pieces, you will be fine, this will be a infinitesimally small blip on your life's radar. Hang in there. SMILE REAL BIG FOR THE CAMERA. I'm watching and waiting with you.

    Claudia
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    unknown said:

    This comment has been removed by the Moderator

    Thanks again! Anyone know for sure how accurate it is for UPSC?
    I did some research last night and couldn't really find anything that showed how accurate CA-125s are as an indicator of recurrance for UPSC. I found a good study on OVARIAN cancer, that showed that a rise of over 80 points in CA125 was a precursor for a recurrance for ovarian cancer 73% of the time. If the blood work was done a second time a month later (to rule out error) and the CA125 continued to rise or stay high, then the precursor for recurrance for OVARIAN cancer was in the 90%. The study also said that, on average, it would be 4 1/2 months until the recurrance could be confirmed with a CT-scan or physical symptoms (apparently the recurrance is usually microscopic when the CA-125 starts to rise.) The other very recent study showed that starting chemo based on CA125 rise alone, and NOT waiting for physical confirmation from a CT-scan or actual symptoms does NOTHING to increase 5-year life expectancy. Apparently chemo kills a 1-cm tumor as easily and quickly as it does microscopic cancer cells. But all of this is about OVARIAN cancer.

    I know they are similar, but they are not identical. And some oncologists won't even use CA125 for uterine cancers because it is so unreliable. So does anyone have anything research-wise on how accurate CA125 is for UPSC? I will be grilling my gyn-onc on Wednesday to get answers for us if there are any. Anyone else have anything they've read about the accuracy of CA125 for UPSC? (I'll bet no recent studies have been done. ARGH!)

    And I still have watery stools every time I eat. So is that a symptom of recurrance? Or do I have a virus that is causing my CA-125 to rise? Lots of questions, no real answers. But I welcome anything any of you have read, good or bad. Thanks!
  • Fran60
    Fran60 Member Posts: 19
    CA125
    First of all you are in my thoughts and prayers. I'm not sure about the CA125, for me it wasn't accurate, when the number was up I did not show any cancer on the ct when it went down to a normal reading I did have cancer. So not sure what to make of it.

    This is such tough stuff to deal with emotionally and physically, but hang in there and it just may all be okay. I can tell that you are a strong woman. Keep us posted as I will be hoping to hear good news!

    Love to my UPSC sister
    Frances
  • thank you
    thank you Member Posts: 77

    Thanks again! Anyone know for sure how accurate it is for UPSC?
    I did some research last night and couldn't really find anything that showed how accurate CA-125s are as an indicator of recurrance for UPSC. I found a good study on OVARIAN cancer, that showed that a rise of over 80 points in CA125 was a precursor for a recurrance for ovarian cancer 73% of the time. If the blood work was done a second time a month later (to rule out error) and the CA125 continued to rise or stay high, then the precursor for recurrance for OVARIAN cancer was in the 90%. The study also said that, on average, it would be 4 1/2 months until the recurrance could be confirmed with a CT-scan or physical symptoms (apparently the recurrance is usually microscopic when the CA-125 starts to rise.) The other very recent study showed that starting chemo based on CA125 rise alone, and NOT waiting for physical confirmation from a CT-scan or actual symptoms does NOTHING to increase 5-year life expectancy. Apparently chemo kills a 1-cm tumor as easily and quickly as it does microscopic cancer cells. But all of this is about OVARIAN cancer.

    I know they are similar, but they are not identical. And some oncologists won't even use CA125 for uterine cancers because it is so unreliable. So does anyone have anything research-wise on how accurate CA125 is for UPSC? I will be grilling my gyn-onc on Wednesday to get answers for us if there are any. Anyone else have anything they've read about the accuracy of CA125 for UPSC? (I'll bet no recent studies have been done. ARGH!)

    And I still have watery stools every time I eat. So is that a symptom of recurrance? Or do I have a virus that is causing my CA-125 to rise? Lots of questions, no real answers. But I welcome anything any of you have read, good or bad. Thanks!

    No real answer.
    I have done lot of research for CA-125 - long nights. If it is low does not rule out recurrence. If it is high does not mean you have recurrence, but you need a CT to confirm. I bet, I hope, I pray, I am sending positive thoughts that this is gastroenteritis. I think you are lucky you will have CT so quickly. Tomorrow you will know - I have a feeling that you will post good news.
    The BEST, Chrysoula

    OK. I know that a year from now, when a woman will come to this site and say that her CA 125 is up, we will answer: Don't worry, this happened to Linda and it turned out to be nothing!!!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Fran60 said:

    CA125
    First of all you are in my thoughts and prayers. I'm not sure about the CA125, for me it wasn't accurate, when the number was up I did not show any cancer on the ct when it went down to a normal reading I did have cancer. So not sure what to make of it.

    This is such tough stuff to deal with emotionally and physically, but hang in there and it just may all be okay. I can tell that you are a strong woman. Keep us posted as I will be hoping to hear good news!

    Love to my UPSC sister
    Frances

    I think this CT is too soon to show recurrance.
    Thanks, Fran, for your insights. I really believe that tomorrow's CT-scan will be too soon to show recurrance, that any growing cancer will still be too small to be picked up. At least that's what I gathered from my research into ovarian cancer; it takes on average 4 1/2 months after the rise in CA125 to get a physical confirmation.

    I am guessing that my CT-scan will be clear this time anyway, and that will allow my family to have a merry Christmas and not be as worried about me, and that is worth a LOT to me. But I will personally be privately holding my breath until my NEXT CT-scan 3 months out. That will be the one I trust and can take comfort in if it's clear. I've said on this Board that I am prepared and at peace with whatever outcome scenario comes my way. I guess we'll see if I know myself that well as I patiently wait out the 4 1/2 months.....if that stat is even valid for UPSC! (as it's an ovarian stat.)
  • I think this CT is too soon to show recurrance.
    Thanks, Fran, for your insights. I really believe that tomorrow's CT-scan will be too soon to show recurrance, that any growing cancer will still be too small to be picked up. At least that's what I gathered from my research into ovarian cancer; it takes on average 4 1/2 months after the rise in CA125 to get a physical confirmation.

    I am guessing that my CT-scan will be clear this time anyway, and that will allow my family to have a merry Christmas and not be as worried about me, and that is worth a LOT to me. But I will personally be privately holding my breath until my NEXT CT-scan 3 months out. That will be the one I trust and can take comfort in if it's clear. I've said on this Board that I am prepared and at peace with whatever outcome scenario comes my way. I guess we'll see if I know myself that well as I patiently wait out the 4 1/2 months.....if that stat is even valid for UPSC! (as it's an ovarian stat.)

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  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    unknown said:

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    I'm guessing they'll re-test the CA-125 if I get a clear CT-scan
    I have a bunch of various appointments coming up with my 3 oncologists and I'm guessing that they will want to re-test the CA-125 if my CT-scan comes out clear. (It won't much matter if they find something tomorrow during my scan; they'll assume the blood test was a valid indicator and the conversation will switch to treatment options.) My bowels are still not right, with watery bowels within an hour after I eat most of the time, so if it's inflammation causing the number to rise, I would need to wait until that gets better. I think I'll know a lot more after I talk with my new gyn-onc Wednesday. He can probably tell me whether this bowel issue is a symptom of a recurrance or not; and I am anxious to get his plan to monitor/treat me going forward.

    Thanks, everyone, for your concern and support. truly.
  • I'm guessing they'll re-test the CA-125 if I get a clear CT-scan
    I have a bunch of various appointments coming up with my 3 oncologists and I'm guessing that they will want to re-test the CA-125 if my CT-scan comes out clear. (It won't much matter if they find something tomorrow during my scan; they'll assume the blood test was a valid indicator and the conversation will switch to treatment options.) My bowels are still not right, with watery bowels within an hour after I eat most of the time, so if it's inflammation causing the number to rise, I would need to wait until that gets better. I think I'll know a lot more after I talk with my new gyn-onc Wednesday. He can probably tell me whether this bowel issue is a symptom of a recurrance or not; and I am anxious to get his plan to monitor/treat me going forward.

    Thanks, everyone, for your concern and support. truly.

    This comment has been removed by the Moderator
  • unknown said:

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  • Katrinka123
    Katrinka123 Member Posts: 51

    I'm guessing they'll re-test the CA-125 if I get a clear CT-scan
    I have a bunch of various appointments coming up with my 3 oncologists and I'm guessing that they will want to re-test the CA-125 if my CT-scan comes out clear. (It won't much matter if they find something tomorrow during my scan; they'll assume the blood test was a valid indicator and the conversation will switch to treatment options.) My bowels are still not right, with watery bowels within an hour after I eat most of the time, so if it's inflammation causing the number to rise, I would need to wait until that gets better. I think I'll know a lot more after I talk with my new gyn-onc Wednesday. He can probably tell me whether this bowel issue is a symptom of a recurrance or not; and I am anxious to get his plan to monitor/treat me going forward.

    Thanks, everyone, for your concern and support. truly.

    Linda, I don't know anything
    Linda, I don't know anything more about CA-125 numbers than what my doctors have told me. They have told me time and time again that they can go up and down for a variety of reasons that have nothing to do with cancer.

    I would bet that your number has gone up b/c of whatever is going on with your bowels - and that is unrelated to cancer too. Perhaps something to do with the radiation treatment, but not a return of cancer.

    All of these treatments come with a whole host of side effects. I know that certain foods that I eat now make my bowels feel more uncomfortable than they did before I had radiation.

    Please know that you drift in and out of my thoughts and I am sending lots of prayers for only good news for you!

    -Kat
  • thank you
    thank you Member Posts: 77

    Linda, I don't know anything
    Linda, I don't know anything more about CA-125 numbers than what my doctors have told me. They have told me time and time again that they can go up and down for a variety of reasons that have nothing to do with cancer.

    I would bet that your number has gone up b/c of whatever is going on with your bowels - and that is unrelated to cancer too. Perhaps something to do with the radiation treatment, but not a return of cancer.

    All of these treatments come with a whole host of side effects. I know that certain foods that I eat now make my bowels feel more uncomfortable than they did before I had radiation.

    Please know that you drift in and out of my thoughts and I am sending lots of prayers for only good news for you!

    -Kat

    Linda, in case you are up this night...
    I see patients who are referred to me for high ESR (inflammatory marker), and come to rule out rheumatologic disease. If the symptoms, physical exam and imaging does not show any disease, we never treat the number. Numbers are numbers.
    Also: check with your radiation oncologist or in the internet if you want about post radiation inflammation (can be acute - at the time of radiation, subacute or chronic). I copy paste something that I found: Radiation colitis can be acute, coming on suddenly or chronic, developing gradually and persisting. With the chronic form of the condition, symptoms may not arise until months or years after radiation therapy is over. Symptoms may include abdominal cramps, rectal bleeding, diarrhea, frequent urges to have bowel movement etc.

    I am trying to say that you should celebrate tomorrow when you get the preliminary results of clear CT (we know it will be clear). The studies you read about the ca 125 are studies for ovarian ca (which always recurs). It is too early for you to have the disease back TOO EARLY!!! Also: when studies mention survival, they don't mention the reason that the patient passed away. May of those patients have comorbidities, and don't die from cancer. They also include population from different countries and different socioeconomic status - compliance etc. I believe that the real numbers are much better with the "state of the art" medicine that you all receive nowadays. I know that whatever I say you just want a clear CT and a decreasing CA 125. And this will happen.