OPINION ON ELEVATED CA125

mopar
mopar Member Posts: 1,972 Member
in Ovarian Cancer #1
Hi all you wonderful ladies and warriors! I'll try to summarize to give you some history:
2000 OVCA, 1C - surgery, chemo
2006 OVCA recurrance - surgery, chemo
First dx the CA125 was 48. Since then, it ranges between 12 and 14, but as been as low as 8. The only way the doctor knew I had possible recurrance in 2006(no evidence on CT), was a continually rising CA125.
January CA125 is 16 (up from 14 in November).
Two weeks ago saw doc - exam good, CT good (NED). But because the January BT was elevated a little, he took it again that night. I just got the results in the mail. It's 26! I've left a message with the PA to see what he would like me to do, if anything.

I know the BT can fluctuate for lots of reasons - I have 11 years experience that tells me that. BUT, what am I to think of this 26? I posted before about 'how small can the CT detect cancer'. So, I would truly appreciate an opinion or two or three on this. I usually don't get nervous about the BT, but I must admit I'm concerned. Anything you can offer would be helpful.

Hugs and prayers to all of you!
Monika

Two weeks ago, doctor visit (exam) and CT report - NED.

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #2
    Is this right?
    Nov, 2010, CA
    Is this right?

    Nov, 2010, CA 125 was 14
    Jan, 2010, it was 16
    Feb, 2010 it was 26

    That's a 12 point rise in 3 months, correct? But the Nov to Jan increase was tiny, and you are still well within the normal range.

    I think I would ask to have my CA125 run every 4 weeks for the next 3 - 6 months. If there is a trend, it will show up. And if there is a big spike, you will know it before there is time for anything really crucial to happen.

    The CT scan can detect some very small stuff, but detecting "something" and identifying it as cancer are two different things. I hate, hate, hate the waiting game. There is, for me, nothing worse. But I don't think there is anything more pro-active to be done here. I would ask for a 90 day supply of Xanax and make a Novena, but that might not be your style. The Xanax, however, is multi-cultural and non-denominational.

    Believe me, I understand your anxiety. I would feel exactly the same way.

    Carlene
  • kayandok
    kayandok Member Posts: 1,202 Member
    #3
    Hi Monika,
    I can understand your fears and wanting to be pro-active. Is your cancer grade 1 (slow moving)? Typically the CA has to double up twice (and have CT detection) in order to treat. But, it sounds like you were treated before, solely on the basis of the CA number. I would defnitely request a monthly CA and also find out how small of a tumor, the CT machine they are using, can detect. Some of the old ones are at the 2cm grid. It can take a pretty high CA (at least for me) to pick up a 2cm tumor.

    Take care,
    kathleen

    PS 11 years is amazing!!!! I didn't realize you were such a long term survivor. Thanks for always sticking around and encouraging others for so long. I know you will be fine, you are a tough cookie!!!
  • mopar
    mopar Member Posts: 1,972 Member
    #4
    kayandok said:

    Hi Monika,
    I can understand your fears and wanting to be pro-active. Is your cancer grade 1 (slow moving)? Typically the CA has to double up twice (and have CT detection) in order to treat. But, it sounds like you were treated before, solely on the basis of the CA number. I would defnitely request a monthly CA and also find out how small of a tumor, the CT machine they are using, can detect. Some of the old ones are at the 2cm grid. It can take a pretty high CA (at least for me) to pick up a 2cm tumor.

    Take care,
    kathleen

    PS 11 years is amazing!!!! I didn't realize you were such a long term survivor. Thanks for always sticking around and encouraging others for so long. I know you will be fine, you are a tough cookie!!!

    THANK YOU!
    Well, I posted very late last night, hoping that when I woke this morning there might be a response. Thank you Carlene and Kathleen for being so faithful and encouraging! I knew that I could count on our teal warriors to come through.

    Yes, you have that right, Carlene. And I agree that the first approach would be to take it again in a few weeks or so and see what happens. I also agree with you, Kathleen, that knowing what grade of CT machine is important. I've noted my questions so that I'll be ready when I hear from my doctor's assistant. I can't deny that these last few months I've had a 'twinge of pain' here and there, but that's not always indicative of something. Scar tissue, extra weight, etc. can be in play.

    I was so pleased to make the 5-year mark on my recurrance. And it's still a milestone, in addition to being here these last 11 years. But these last 10 months I have been burning the candle at both ends - working during the week, cleaning offices 2 weekends out of the month, taking care of my daugther and grandson 4-5 days a week (my daugther has severe rheumatoid arthritis and fibromyalgia), assisting my disable husband, and I thought I was keeping a 'balance'.

    Thanks for all the suggestions and encouragement ladies. Have a wonderful day!

    (((HUGS))) & Prayers!
    Monika
  • curlyq1971
    curlyq1971 Member Posts: 56
    #5
    mopar said:

    THANK YOU!
    Well, I posted very late last night, hoping that when I woke this morning there might be a response. Thank you Carlene and Kathleen for being so faithful and encouraging! I knew that I could count on our teal warriors to come through.

    Yes, you have that right, Carlene. And I agree that the first approach would be to take it again in a few weeks or so and see what happens. I also agree with you, Kathleen, that knowing what grade of CT machine is important. I've noted my questions so that I'll be ready when I hear from my doctor's assistant. I can't deny that these last few months I've had a 'twinge of pain' here and there, but that's not always indicative of something. Scar tissue, extra weight, etc. can be in play.

    I was so pleased to make the 5-year mark on my recurrance. And it's still a milestone, in addition to being here these last 11 years. But these last 10 months I have been burning the candle at both ends - working during the week, cleaning offices 2 weekends out of the month, taking care of my daugther and grandson 4-5 days a week (my daugther has severe rheumatoid arthritis and fibromyalgia), assisting my disable husband, and I thought I was keeping a 'balance'.

    Thanks for all the suggestions and encouragement ladies. Have a wonderful day!

    (((HUGS))) & Prayers!
    Monika

    CA125
    Monika~

    I had something similar happen to me last year, I went for my 6 month check up in August and CA was 22 and for the past 5 years it had been 13, I totally freaked but I had another CA a month later and it was 25 and my dr. told me if it the rise was due to cancer it would have more than doubled already. There could be something else going on in your body other than cancer and since your ct scan was clear I wouldn't worry to much, (I know easier said than done), however if you want to put your mind at ease I would suggest another CA125 in a month. Just to let you know I had another CA in February and it was 22, so I beleive this is my new normal and my oncologist has released me for yearly visits. I hope this helps ease your mind a little bit:)

    Congratulations on 11 years!!!

    ((HUGS))

    Leslie
  • mopar
    mopar Member Posts: 1,972 Member
    #6
    curlyq1971 said:

    CA125
    Monika~

    I had something similar happen to me last year, I went for my 6 month check up in August and CA was 22 and for the past 5 years it had been 13, I totally freaked but I had another CA a month later and it was 25 and my dr. told me if it the rise was due to cancer it would have more than doubled already. There could be something else going on in your body other than cancer and since your ct scan was clear I wouldn't worry to much, (I know easier said than done), however if you want to put your mind at ease I would suggest another CA125 in a month. Just to let you know I had another CA in February and it was 22, so I beleive this is my new normal and my oncologist has released me for yearly visits. I hope this helps ease your mind a little bit:)

    Congratulations on 11 years!!!

    ((HUGS))

    Leslie

    SIDE NOTE
    Thank you so much, Leslie. Along with posts from Carlene and Kathleen, AND having talked to the PA a few moments ago, I think I feel a little more at ease, at least for the time being.

    She asked me if I've had any infections lately. I dont' believe so, but I did mention the stress I've been under with everything else going on. I also haven't been very diligent with my diet, by that I mean eating the way I normally do - healthy. I'm on the go so much, I've been craving carbs and that's not good. Anyway, I also asked about the CT machine. She said the smallest it can detect would be 1cm. However, the doctor said he didn't 'feel anything' when he examined me. And he is very thorough. So again, I'm hoping this is just a 'hiccup'.

    I also want to mention that 2 or 3 years ago my doctor gave me Boniva (you can search for my previous post on that) and I will NEVER take it again. It was horrible. The pain and side affects were unbelievable. And my next CA level had jumped from my normal 12 to 36! This was, I believe and so does the PA, due to the enormous ammount of inflammation that the Boniva caused. Anyway, once again I know infection, etc. can cause it to rise.

    Thank you so much for your encouraging words, Leslie. I'll post my next level when I get it.

    (((HUGS)))
    Monika
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #7
    mopar said:

    SIDE NOTE
    Thank you so much, Leslie. Along with posts from Carlene and Kathleen, AND having talked to the PA a few moments ago, I think I feel a little more at ease, at least for the time being.

    She asked me if I've had any infections lately. I dont' believe so, but I did mention the stress I've been under with everything else going on. I also haven't been very diligent with my diet, by that I mean eating the way I normally do - healthy. I'm on the go so much, I've been craving carbs and that's not good. Anyway, I also asked about the CT machine. She said the smallest it can detect would be 1cm. However, the doctor said he didn't 'feel anything' when he examined me. And he is very thorough. So again, I'm hoping this is just a 'hiccup'.

    I also want to mention that 2 or 3 years ago my doctor gave me Boniva (you can search for my previous post on that) and I will NEVER take it again. It was horrible. The pain and side affects were unbelievable. And my next CA level had jumped from my normal 12 to 36! This was, I believe and so does the PA, due to the enormous ammount of inflammation that the Boniva caused. Anyway, once again I know infection, etc. can cause it to rise.

    Thank you so much for your encouraging words, Leslie. I'll post my next level when I get it.

    (((HUGS)))
    Monika

    Burning the candle at both ends
    Monika

    You already know what you need to do but you are having a hard time putting your own health needs ahead of your loved ones' needs & it sounds like you are the main breadwinner, too. I think you certainly deserve some "me time"--good luck finding it (easier said than done, I know). Think of what the airline stewardess tells passengers before every flight:

    "If you are traveling with a child, put your own oxygen mask on FIRST, then help the child..."

    Poor diet (refined carbs) increases blood insulin levels and insulin is an inflammatory hormone. Once you get back to your healthy diet, I expect your inflammatory markers (including the CA-125) will drop accordingly. Then you won't have to blast the bugs unless you really need to. An anti-inflammatory diet could do wonders for your daughter, too.

    There the NEW biomarker for OVCA you may want to consider: HE4. It is elevated in 60% of women with disease progression. My oncologist is not familiar with the HE4; my family doctor ordered the test for me on my request. My HE4 was > 600 before my diagnosis last year and it should be < 115. I don't think it is linked to inflammation but I don't know for sure.

    I just had a blood sample sent to the Mayo Clinic again earlier this week to check the HE4 level and it takes a while to get the results (a week or more). I am expecting it to be down since my CA-125 is < 7. I think of myself as an uncontrolled experiment so the more data to monitor the progress the better.

    Here's a link to a web site for more information:

    http://www.aruplab.com/Testing-Information/resources/TechnicalBulletins/Human Epididymis Protein 4 (HE4).p

    Thanks for sharing your concerns with us. We are all doing the best we can to survive.
  • mopar
    mopar Member Posts: 1,972 Member
    #8
    LaundryQueen said:

    Burning the candle at both ends
    Monika

    You already know what you need to do but you are having a hard time putting your own health needs ahead of your loved ones' needs & it sounds like you are the main breadwinner, too. I think you certainly deserve some "me time"--good luck finding it (easier said than done, I know). Think of what the airline stewardess tells passengers before every flight:

    "If you are traveling with a child, put your own oxygen mask on FIRST, then help the child..."

    Poor diet (refined carbs) increases blood insulin levels and insulin is an inflammatory hormone. Once you get back to your healthy diet, I expect your inflammatory markers (including the CA-125) will drop accordingly. Then you won't have to blast the bugs unless you really need to. An anti-inflammatory diet could do wonders for your daughter, too.

    There the NEW biomarker for OVCA you may want to consider: HE4. It is elevated in 60% of women with disease progression. My oncologist is not familiar with the HE4; my family doctor ordered the test for me on my request. My HE4 was > 600 before my diagnosis last year and it should be < 115. I don't think it is linked to inflammation but I don't know for sure.

    I just had a blood sample sent to the Mayo Clinic again earlier this week to check the HE4 level and it takes a while to get the results (a week or more). I am expecting it to be down since my CA-125 is < 7. I think of myself as an uncontrolled experiment so the more data to monitor the progress the better.

    Here's a link to a web site for more information:

    http://www.aruplab.com/Testing-Information/resources/TechnicalBulletins/Human Epididymis Protein 4 (HE4).p

    Thanks for sharing your concerns with us. We are all doing the best we can to survive.

    THANK YOU CONFIRMATION OF MY SUSPICIONS!
    And also thank you for your consideration regarding my 'stress level'. Hubby and I have always been 'health conscious' regarding foods, supplements, exercise, priorities, family, with our faith at the top of the list. I do believe that all of that has played a huge role in my 11 year survival, as I know it does for all of us. So, it shouldn't surprise me that considering how I've been treating ME lately has exhibited consequences via my CA125. Nonetheless, seeing that high number still sends a chill through me and makes my mind race a bit toward the 'what ifs', and get a little nervous. So reading your post this morning, in addition to everyone elses these last few days, has put me back on track and made me feel better.

    I love the stewardess analogy. I'll have to remember that one! And it is so true. Although I have to say I wonder what Mother Theresa did to take care of herself while caring for so, so many people in this world?!?!

    As for the HE4, I did ask my doc last year and I don't recall why he said it wouldn't be 'for me'. However, I will look into the website. And we put our daughter on an anti-inflammatory diet as well last year. It has made a difference. But it hit her so fast and so hard that it has been a long, long road for her.

    Prayers and hugs to you and everyone, once again, for your quick responses, caring, compassion, and your strong shoulders for me to cry on!

    Monika
  • Lisak
    Lisak Member Posts: 59
    #9
    mopar said:

    THANK YOU CONFIRMATION OF MY SUSPICIONS!
    And also thank you for your consideration regarding my 'stress level'. Hubby and I have always been 'health conscious' regarding foods, supplements, exercise, priorities, family, with our faith at the top of the list. I do believe that all of that has played a huge role in my 11 year survival, as I know it does for all of us. So, it shouldn't surprise me that considering how I've been treating ME lately has exhibited consequences via my CA125. Nonetheless, seeing that high number still sends a chill through me and makes my mind race a bit toward the 'what ifs', and get a little nervous. So reading your post this morning, in addition to everyone elses these last few days, has put me back on track and made me feel better.

    I love the stewardess analogy. I'll have to remember that one! And it is so true. Although I have to say I wonder what Mother Theresa did to take care of herself while caring for so, so many people in this world?!?!

    As for the HE4, I did ask my doc last year and I don't recall why he said it wouldn't be 'for me'. However, I will look into the website. And we put our daughter on an anti-inflammatory diet as well last year. It has made a difference. But it hit her so fast and so hard that it has been a long, long road for her.

    Prayers and hugs to you and everyone, once again, for your quick responses, caring, compassion, and your strong shoulders for me to cry on!

    Monika

    Mopar
    I know how awful it is to wait.. Please keep us update. Monika, you will be in my prayers!
    Lisa
  • mopar
    mopar Member Posts: 1,972 Member
    #10
    Lisak said:

    Mopar
    I know how awful it is to wait.. Please keep us update. Monika, you will be in my prayers!
    Lisa

    THANK YOU!
    Thanks so much, Lisa. Trying this week to remain 'calm'. I will go Saturday morning to get the test, then will call the PA at my doctor's office to she if she'll give me the results sometime next week. I truly, truly appreciate your prayers!
    (((HUGS)))
    Monika
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #11
    Great Advice from Everyone
    The CA-125 is a guide.....mine is 43 and I don't have OVCA...but as a result of 2 in the 40's CA-125s and the history in my family, my ovaries are gone.....There is a wide range of normal and Laundry Queen is correct, changing diet can affect the BT very much, as well as cortisol, the stress hormone........My advisement: take the CA-125 monthly and always use the same lab, same time of day...different labs sometimes have little differences in analyses and can cause different numbers...My mother's doctor is adamant about that, so is mine....so I wonder was your BT processed in the same place? Had you had a cold or anything? Also, keep in mind you are still in Normal range.......that's a very good thing....congratulations on such a long remission.....so encouraging to hear....
  • mopar
    mopar Member Posts: 1,972 Member
    #12
    Lisa13Q said:

    Great Advice from Everyone
    The CA-125 is a guide.....mine is 43 and I don't have OVCA...but as a result of 2 in the 40's CA-125s and the history in my family, my ovaries are gone.....There is a wide range of normal and Laundry Queen is correct, changing diet can affect the BT very much, as well as cortisol, the stress hormone........My advisement: take the CA-125 monthly and always use the same lab, same time of day...different labs sometimes have little differences in analyses and can cause different numbers...My mother's doctor is adamant about that, so is mine....so I wonder was your BT processed in the same place? Had you had a cold or anything? Also, keep in mind you are still in Normal range.......that's a very good thing....congratulations on such a long remission.....so encouraging to hear....

    THANK YOU, LISA!
    I'm soaking up all the encouraging words and support from everyone! The thing is, my CA125 was always very 'telling'. CT's and exams didn't show anything regarding my recurrance, so as it was climbing my doctor decided to do another surgery and located another small tumor. Having said that, your thoughts about a different lab are correct. I always go to the Quest lab in my area. This particlar test was taken at the doctor's office and sent to a different lab, who's 'normal' range is different, I might add. So, that, plus the fact that they mixed mine up one time with someone else's, and my stress levels, etc., etc., are some of the many things I am holding on to till I get the next result.

    Thank you so, so much for your support and concern. And thank you for the congrats on remission. I pray everyday for everyone here that we might all go into PERMANENT remission.

    Luv, Hugs and Prayers to all!
    Monika

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