What does anyone know about the CA125

paula44
paula44 Member Posts: 23
edited March 2014 in Ovarian Cancer #1
My CA125 came back normal - my dr didn't tell me the actual number. He just said it was perfectly normal. I still can't have the "mass" removed though because of the recent colon resection I just had. The want to wait and let me heal some more before we do anything. Can't I still have cancer even though the CA125 is normal? I know my radiologist's report said he couldnt rule out the possibility of ovarian cancer. And my dr must be concerned to have run the test.
I just don't know that much about CA125. Anyone else?

Comments

  • shortstuff
    shortstuff Member Posts: 79
    Hi Paula. Well a normal CA125 can be anywhere from 0 to I believe it is 32. So when your Dr. says it is normal it can be anywhere in between those numbers. Some people can have a normal CA125 and still have cancer and some people can have an elevated CA125 and not have cancer so it isn't the most reliable test. That is why ovarian cancer is so hard to detect. But I would think that a normal CA125 would be a good thing in your case and that the "mass" could just be a benign cyst or something. But it is good to check it out. I'll keep you in my prayers that everything turns out fine for you. I know it is crazy to tell you to try not to worry and waiting is not fun but all you can do is put it in God's hands and hope for the best. I wish you all the luck in the world and please keep us posted. Take care, Polly
  • saundra
    saundra Member Posts: 1,370 Member
    Wow! Your doctor didn't tell you your CA-125 number? I get a copy of my blood test results with every visit. Most of the time I don't even ask, they just print and hand it to me. Since it takes 24 hours to get the CA-125 they either call me or I call them the next day. I want to know all test results. I concur that 0-32 is in the normal range. Mine three weeks ago was 6. My daughter's, who will now elect to have one with each annual check up at age 47 was 11. I read as much as I can on the internet and ordered a book published by Johns Hopkins named "A guide to Suvivorship for Women with Ovarian Cancer by F.J. Montz and Robert E. Bristow that is easy to read and has most all the answere to my questions. I got it from amazon.com for under $10. I had to really work on myself to get out of that worry stage and convince myself that those anxious thoughts did my absolutely no good to my survivorship. Keep us posted and welcom the this site. I read it every day just about. Saundra
  • kris43
    kris43 Member Posts: 275
    Paula - I also agree the CA 125 normal range is 32 and below. When I had my test in July before I left the hospital mine was 1632 and last Monday I was at 10.1. This was after debulking surgery and 2 treatments. I too cannot believe your doctor does not give you all of your numbers. My doctor's office calls every Monday afternoon to give me the numbers plus they make copies of the lab reports and give them to me when I go in for my physical every 3 weeks.

    Is the doctor you are currently working with a gynecological/oncologist/surgeon? Or just the same surgeon you worked with before on the colon cancer? You do have a right to a second opinion and if that is not feasible then I would personally call and ask for a face to face appointment and go in with a list of questions that you want answered. It is your right, it is your body and you need to be proactive in your treatment. I had to do this and I was terrified that the doctor would think I was questioning her - but I had to do it to put my mind at rest and feel like I was really being listened too. That I was a person and not just a patient.

    I wish you peace of mind and please keep us posted . You can also googles this stuff. The National Cancer Institute website has a lot of great information as does curetoday.com.

    Take care! Kris
  • paula44
    paula44 Member Posts: 23
    Thanks for your responses; now I feel scared all over again, like maybe the dr isn't telling me everything or isn't doing his job. I worry worry worry. I'm in Dallas at what is supposed to be one of the top hospitals in the country and I believe with qualified drs - at least I want to believe that. My ob/gyn is a surgeon; my colorectal surgeon performed my colon surgery. Now the two drs are working back and forth since this latest development appears to be more of a ob/gyn matter. My ob/gyn has said from the start that he thinks this cysts is possibly a blood clot, from the ovarian being disturbed during the colon surgery and subsequently "bleeding out". But then he ran the CA125 which made me wonder what he was thinking. Also I saw the radiologist report that said it couldn't rule out ovarian cancer, based on the appearance of the cyst. But my dr doesn't want to do surgery on me right now - until I heal some more from the colon surgery. So is he being aggressive enough? Or am I just borrowing trouble? This is driving me crazy. It's all I think about.

    Thanks for everyone's kind words and helpful advice. Paula
  • mopar
    mopar Member Posts: 1,972 Member
    paula44 said:

    Thanks for your responses; now I feel scared all over again, like maybe the dr isn't telling me everything or isn't doing his job. I worry worry worry. I'm in Dallas at what is supposed to be one of the top hospitals in the country and I believe with qualified drs - at least I want to believe that. My ob/gyn is a surgeon; my colorectal surgeon performed my colon surgery. Now the two drs are working back and forth since this latest development appears to be more of a ob/gyn matter. My ob/gyn has said from the start that he thinks this cysts is possibly a blood clot, from the ovarian being disturbed during the colon surgery and subsequently "bleeding out". But then he ran the CA125 which made me wonder what he was thinking. Also I saw the radiologist report that said it couldn't rule out ovarian cancer, based on the appearance of the cyst. But my dr doesn't want to do surgery on me right now - until I heal some more from the colon surgery. So is he being aggressive enough? Or am I just borrowing trouble? This is driving me crazy. It's all I think about.

    Thanks for everyone's kind words and helpful advice. Paula

    Paula:
    Wow, do I feel your anxiety. We've all been there, and it is no easy path. But I echo the words of all others - get a copy of your results. If nothing else, it will give you something to refer to regarding further tests. We all need that 'baseline' number. Then they would watch for sudden increases, or even a slow consistent rise that may alert them to possible problems and warrant a more thorough investigation. Even though the CA125 is not used as a diagnostic tool, it's still useful.

    Take a breather this weekend. First thing Monday get a copy of the report. We'd be more than happy to give you some feedback once we know what the level is, according to our own experiences. And knowing 'something' is there, your doctor did the right thing by running the test. It doesn't mean there IS a problem. Try to spend your 'anxiety energy' for recovery instead. The sooner you recooperate from an already stressful situation, the sooner you can deal with whatever you need to deal with. Please don't think the worst. We'll be waiting to hear from you.

    Till then. . .
    Hugs and Prayers!
    Monika
  • kris43
    kris43 Member Posts: 275
    paula44 said:

    Thanks for your responses; now I feel scared all over again, like maybe the dr isn't telling me everything or isn't doing his job. I worry worry worry. I'm in Dallas at what is supposed to be one of the top hospitals in the country and I believe with qualified drs - at least I want to believe that. My ob/gyn is a surgeon; my colorectal surgeon performed my colon surgery. Now the two drs are working back and forth since this latest development appears to be more of a ob/gyn matter. My ob/gyn has said from the start that he thinks this cysts is possibly a blood clot, from the ovarian being disturbed during the colon surgery and subsequently "bleeding out". But then he ran the CA125 which made me wonder what he was thinking. Also I saw the radiologist report that said it couldn't rule out ovarian cancer, based on the appearance of the cyst. But my dr doesn't want to do surgery on me right now - until I heal some more from the colon surgery. So is he being aggressive enough? Or am I just borrowing trouble? This is driving me crazy. It's all I think about.

    Thanks for everyone's kind words and helpful advice. Paula

    Paula - please, take a deep breath, close your eyes and just be calm - if only for a moment. Is there something you can do this weekend to take your mind off the worry?

    My hope for you is that you take time and enjoy a beautiful weekend by calling a friend, going out for lunch, watching a movie, baking cookies, cleaning your house, going to church, making a craft, eating a decadent dessert, doing yard work, exercising - ANYTHING but sitting alone and worrying about something you do not have control over at this moment in time.

    Please know we are all thinking of you and praying for you and hoping that you get excellent news very soon. Hang in there!!! Kris
  • saundra
    saundra Member Posts: 1,370 Member
    paula44 said:

    Thanks for your responses; now I feel scared all over again, like maybe the dr isn't telling me everything or isn't doing his job. I worry worry worry. I'm in Dallas at what is supposed to be one of the top hospitals in the country and I believe with qualified drs - at least I want to believe that. My ob/gyn is a surgeon; my colorectal surgeon performed my colon surgery. Now the two drs are working back and forth since this latest development appears to be more of a ob/gyn matter. My ob/gyn has said from the start that he thinks this cysts is possibly a blood clot, from the ovarian being disturbed during the colon surgery and subsequently "bleeding out". But then he ran the CA125 which made me wonder what he was thinking. Also I saw the radiologist report that said it couldn't rule out ovarian cancer, based on the appearance of the cyst. But my dr doesn't want to do surgery on me right now - until I heal some more from the colon surgery. So is he being aggressive enough? Or am I just borrowing trouble? This is driving me crazy. It's all I think about.

    Thanks for everyone's kind words and helpful advice. Paula

    I had my debulking surgery at Baylor by a gyn/onc that offices in Sammons Cancer Center (Texas Oncology). He comes to Midland every other month for my check ups and I have my chemo here with Texas Oncology. If you have further surgery for the ovary make sure it is a gyn/oncologist because they have special training in removing all the little spots that have spread.
    My surgeon got everything over one half a centimeter, and my cancer had spread to the liver and everything in between. Have a good weekend and don't worry.
  • paula44
    paula44 Member Posts: 23
    I can't believe how supportive everyone here has been. I had my colon surgery with someone in the Sammons Tower; however my gyn is not. I may want that name if it gets to that point. I did take the day off and my husband took me out of town. I still worried, but it helped. To top it all off I received a jury summons in the mail yesterday! Like I'm really up to that!

    Thanks so much for all of your support. I'll keep you posted.
  • curlee8661
    curlee8661 Member Posts: 56
    paula44 said:

    I can't believe how supportive everyone here has been. I had my colon surgery with someone in the Sammons Tower; however my gyn is not. I may want that name if it gets to that point. I did take the day off and my husband took me out of town. I still worried, but it helped. To top it all off I received a jury summons in the mail yesterday! Like I'm really up to that!

    Thanks so much for all of your support. I'll keep you posted.

    Hi Paula,
    Those of us on this board diagnosed with ovarian cancer have come to measure the state of our health with the CA-125 test, therefore those numbers are very important to us. At this point, I don't think that's something you need to worry about. As you know by now, those numbers aren't very meaningful without a diagnosis, which you won't have until after surgery.

    I know how hard it is to have to wait to remove from your body what could potentially be cancer, but as your doc has stated, surgery now can do you more harm than good. So, as frustrating as it is unfortunately you have to wait. I know it's easier said than done, but try not to worry! In all likelyhood your OB/GYN is correct in thinking that the mass on your ovary is a result of your previous surgery, and NOT cancerous. It sounds to me like he is doing everything that needs to and can be done at this point except one: to refer you to a Gynocologic Oncologist for at least a consultation, and probably for the surgery as well. I understand that your GYN is a surgeon and could therefore handle the operation, but on the off chance that this mass does turn out to be cancerous, your best odds are with this specialist. I know Saundra has mentioned it above, but I just want to make sure you understand the importance of it, so please be sure to ask for this referral!

    In the mean time, healing from your previous surgery is your #1 priority. I don't know if this is of any help, but the only way I was able to go through all this without going nuts is by not letting myself get too involved with the 'what if's and reminding myself to just BREATHE when I was feeling overwhelmed. Keep in mind that stress is bad for your health, so the less you manage to worry the better off you are.

    Whishing you good health, and that you never have to worry about the CA-125!

    Marianna
  • paula44
    paula44 Member Posts: 23
    Thanks so much for the detailed info. I'm going back to see my gyn next week and now I feel so much better prepared.

    I feel foolish - like I should be more on top of things and better know what to ask. This has just been so overwhelming and so much has happened so fast. I'm young (early 40's) and otherwise healthy and this has all been so unexpected.

    At this point I doubt everything - myself, my dr's, the system. I'm having a hard time knowing who and what to trust. Does that make sense? I'm questioning everything and constantly second guessing myself as well as others.

    I really do appreciate the help here.

    Paula
  • challen14
    challen14 Member Posts: 29
    Hi Paula. I'm sorry about your situation. I want to know what my number is every time I get tested. My paperwork shows that normal is 0-35. My gyn told me that the CA125 test is unreliable unless the ovaries have been removed in most cases, thus the difficulty of early detection. A gyn/onc is the person you want to consult with. I'll keep you in my thoughts and prayers. Take care.
    Charlotte
  • groundeffect
    groundeffect Member Posts: 639 Member
    The Women's Cancer Network (sponsored by the Gynecologic Cancer Foundation) has a nice publication called "Understanding CA-125 Test", which I read last night. The text is on their website at www.wcn.org.

    Here's a little of what they say:

    "CA-125 is NOT a good screening test for ovarian cancer, and all the existing data tells us that it is not effective for that purpose. The CA-125 blood test measures a protein in the blood which is produced by normal cells, as well as by cells from common non-cancerous conditions such as endometriosis, fibroids, benign ovarian cysts, pelvic infections, , pregnancy, and normal menstrual periods. Non-gynecologic conditions such as liver disease and inflammatory diseases as well as a variety of cancers also elevate the CA125 levels.

    For postmenopausal women who have an elevated CA-125 level, 95% will not have ovarian cancer. The test is even less accurate for women prior to menopause. And, in women who do have early ovarian cancer, (those women we need to find since ovarian cancer is still highly curable) the CA-125 levels will be normal in at least 50%."
  • paula2
    paula2 Member Posts: 162
    Dear Paula,

    You can get a copy of your lab work from the lab, or the doctor's nurse. Note the date of the ca125, your present condition, file it and forget about it.

    I think you are doing an amazing job of staying on top of things; for one, you found an online group. The anxiety behind cancer predictors is immeasurably frightening. But that's what it is, Fear, that nasty, unproductive, state that robs us of our energy. So, turn the channel, engage yourself in a get well program, list the things you Can do, love and live the life you are in.

    I admire your strength and wish you even more healing energy,

    Peace and Love,
    Paula2