CA125 increase

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els19
els19 Member Posts: 106 Member

I was diagnosed with USPC grade 3 stage 3c in April 2014. I had the pretty typical treatment, Da Vinci surgery followed by 6 chemos with carbo/taxol and then 26 radiation treatments and 2 brachytherapy. My CA 125 was 49 after surgery, dropped after the first chemo and has been in the teens since July/2014. My lowest number was earlier this year when it went to twelve in March. The July test showed 16 but I had a  Sinus infection and was told that may have caused it plus 16 was close to the 14 or 15 that  seemed normal for me. But last weeks test showed 25.8. I see my oncologist on Thursday. I am so scared! This was going to be the two year appointment that was going to be the celebration of being officially 2 years NED. My doctor talked about then going to 6 month checkups and I was going to get my port out. Has anyone else had a spike in the level that turned out to be nothing? Should I ask for a CT scan if the doc doesn't suggest one? He doesn't believe in using them and goes by the examination and symtoms. If it is a reoccurrence, has anyone had a reoccurrence and then been ok? 

I found this site when I was first diagnosed and it was where I found hope. I always planned to sign on but I just never found the nerve. Thanks to all of you who have given me so much help.

Comments

  • ConnieSW
    ConnieSW Member Posts: 1,681 Member
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    Hi, Els

    I can't answer your questions from personal experience but we have had woman who recurred, some more than once, who are doing well.  You are in a scary place but by no means one where you should lose hope.  What I would like to comment on is frequency of exams.  i don't know what the  criteria for exam frequencies is but, even if this hopefully turns out to be a false alarm,  I wouldn't be comfortable going to 6 month exams at the point you are.  I was UPSC 1a and had labs and exams every 3  months for 3 years and am currently checked every 4 months.  I completed chemo a little over 4 years ago.  I don't have ct scans.  So, if I were you, I would ask to continue frequent checks.

    i wish you luck and will be looking forward to hearing good news from you.  

  • els19
    els19 Member Posts: 106 Member
    edited November 2016 #3
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    Thanks

    Thanks for your advice, Connie. I am planning on insisting on closer follow ups. And I want another blood test to see if this one was just a fluke. I have read about the HE 4 test too. And I plan to ask about it.  I do have a good gyn/Onc. I always get nervous before these checkups and the higher number is just making that worse. Hopefully my doctor will have something to suggest.

    Sue

     

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited November 2016 #4
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    Els, CA125 increase

    Els,
    25 is still in range (<35). They say if the number doubles to abou 70 it indicates a recurrence.
    I also get a blood test for HE4- they say it is more reliable than CA125.  There is also a test
    that combines the two, though I have never had it done (think it is called ROMA).  The key is to look at trending. 
    would wait another 3 months to see what the tests show then.

    I am NED from Stage 4 EC (diagnosed in Oct   2014). I get pelvic, abdominal and transvaginal ultrasounds
    to monitor my remission.  Don't want any more CT scans unless something is suspicious. Too much
    radiation. My doctor also does the standard pelvic exam plus a pap test every 3 months. If you are really
    worried, there are many other blood tests you can get that can monitor you (some for cancer in general-HCG,
    DHEA-S, some for conditions that lead to cancer - ferritin, IGF-1, estradiol). I would like to be warned via
    blood tests- so I look at the trends of all these tests that I get.

    Takingcontrol58

     

  • els19
    els19 Member Posts: 106 Member
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    Thanks

    I really appreciate all the advice. I know that 25 is in the normal range but the increase is scary as any sign is before an appointmen. I do have a good Gyn/Onc at a major cancer hospital. I'll ask about the other blood tests and I like the idea of the ultra sounds instead of a CT scan. I love to hear all the advice and experiences all of you on this sight share. I think it helps when discussing things with the doctors. This sight has been a godsend to me and got me through the last couple of years. I just wish I'd posted before. But now that I have, I hope to continue and help others as so many helped me.

    Sue

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited November 2016 #6
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    Hi Sue...

    Just read your post and it sure touches on my fears- I was told there is nothing as far as markers to watch and my CA125 wasn't ever elevated so my Doc was counting on physical exams and symptoms only- that doesn't feel real solid- so glad you posted as the reponses are great, as you said.  So grateful for the ladies here!!!

    Sending prayers for peace and a continued dance with NED.  I know it's hard but try to stay in the day you are in- it's really all any of us has- just today and today you are fine- today you are blessed- today there is so much to be thankful for. (((HUGS)))  Keep us posted :D

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    It has got to be so

    It has got to be so heartbreaking when you are so close to the two-year milestone to get scary news like this. The good news is that it sounds like you have a good gyn-onc at a reputable cancer center so you are in good hands no matter what the outcome. And you have us to lean on when times get tough. We'll be here for you. If you feel up to it, let us know how it goes at your appointment on Thursday. Wishing you peace and hope, Kim

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,388 Member
    edited November 2016 #8
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    els19 said:

    Thanks

    Thanks for your advice, Connie. I am planning on insisting on closer follow ups. And I want another blood test to see if this one was just a fluke. I have read about the HE 4 test too. And I plan to ask about it.  I do have a good gyn/Onc. I always get nervous before these checkups and the higher number is just making that worse. Hopefully my doctor will have something to suggest.

    Sue

     

    Sue, it sounds like you are

    Sue, it sounds like you are making a good plan here.  While it is in the 'normal' range I think we have all worried over things - and that is OK!  Please let us know how it goes.

  • bluehyacinth
    bluehyacinth Member Posts: 54 Member
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    My CA125 doubled within range

    My CA125 doubled within range and right after chemo and sure enough mets showed up. I am also UPSC stage 3 and since it tends to be a good marker for UPSC and my cancer (not so much for regular type 1 endo cancer)  I get the test monthly.

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited November 2016 #10
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    Finally convinced my mom's

    Finally convinced my mom's med onc to get her CA-125 levels checked to see if that is an applicable marker for her after reading this thread. It looks like it's a good marker for some people although not all. Although we don't have an initial base line and since she's started her first chemo session already, we're going to go get her blood drawn in the next few weeks and then for the rest of the treatment to see her CA-125 changes.

  • els19
    els19 Member Posts: 106 Member
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    Doctors appt

    I saw my doctor today and my exam was good. I recently had an upper respiratory infection and a UTI. He thinks the increase in the CA 125 is a result of the infections. He said either infection could skew the CA 125. And my numbers are still in the normal range.  Since I have no other symptoms  and have a good energy level, he felt confident things are ok. We are retesting in six weeks. He said if I had not had the infections or hadn't bounced back from them he would have investigated further. He did say the CA125 is a useful tool in tracking patients like me who have USPC 3c have had at least one lymph node involvement. My cancer was contained in the uterus, hadn't went through the wall and had not spread to the ovaries or tubes.  My pelvic washings were clear. But as this sneaky disease does, it was in two lower lymph nodes. 

  • ConnieSW
    ConnieSW Member Posts: 1,681 Member
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    Sounds like a plan

    Wait and see is hard but sensible.  I choose  to believe your doc is right about the infection.  No need to go to bad places unless you have to!

  • Nellasing
    Nellasing Member Posts: 528 Member
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    That is very good news!

    For today that is GOOD NEWS and for that we are thankful :D  It's good to know his thinking and sure does make sense.  Put those dancing shoes back on and keep dancing with NED!   (((HUGS)))

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    els19 said:

    Doctors appt

    I saw my doctor today and my exam was good. I recently had an upper respiratory infection and a UTI. He thinks the increase in the CA 125 is a result of the infections. He said either infection could skew the CA 125. And my numbers are still in the normal range.  Since I have no other symptoms  and have a good energy level, he felt confident things are ok. We are retesting in six weeks. He said if I had not had the infections or hadn't bounced back from them he would have investigated further. He did say the CA125 is a useful tool in tracking patients like me who have USPC 3c have had at least one lymph node involvement. My cancer was contained in the uterus, hadn't went through the wall and had not spread to the ovaries or tubes.  My pelvic washings were clear. But as this sneaky disease does, it was in two lower lymph nodes. 

    Thank you for sharing this

    Thank you for sharing this very positive news! So happy for your continued good health!

  • Mmpeterson
    Mmpeterson Member Posts: 124
    edited November 2016 #15
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    Wonderful news, funny how

    Wonderful news, funny how that ca125 number is affected my numerous things.  Before my surgery is was 26 then after surgery before my first chemo treatment is was 183, yikes!!  Will find out what it is next week, hopefully it went down.  Many prayers you will stay healthy!!  Maryanne