CA 125 up from 21 to 41

Went for my 1 year 3 month. check up at MD Anderson. CA 125 is up from a steady 21 to 41. Doctor was concerned. Asked me what I wanted to do. Wait and do another CA 125 or have a CT scan to rule out any problems. It has been a year since my last CT scan. Pelvic exam was negative. I opted for the CT scan on May 17. To make matters worse this board was down for most of the night. I am afraid and nervous. Hubby is not worried. I have no symptoms. Energy is great. Appetite is huge. I feel wonderful except for the gnawing in my nervous stomach.

The nurse praticioner said that since my last CA 125 in Jan. MD Anderson changed their test and there have been several high results for patients. I am hoping and praying for NED results again. Hubby said I am worrying too much. I am anxious for the results on Wed from the CT Scan.

I think I am more worried than when I was first diagnosed. Silly I know.

You guys are an inspiration to me. I know I can do this whatever the results. More chemo, sure...bring it on. I want to have as much time as possible.

I think the waiting is the worst part.
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Comments

  • upsofloating
    upsofloating Member Posts: 466 Member
    Norma so sorry this issue
    Norma so sorry this issue has sprung up ... in springtime no less. I think when first diagnosed it was so out of left field and the whole journey ahead was a total unknown - unknown in not knowing the challenges of the journey ahead, extent of issues, and I basically felt fine -- sort of a "so what's the big deal here??" But when that first bump in the road hits later on we have way too much knowledge and insight. Hits pretty hard - it did for me as well. But at this point you only have a number, no evidence, so this may be just due to the testing changes since your last one. On the other hand, if anything does show up, you're finding it early and there are many options if you must go down that road. My first "recurrence" spontaneously resolved before I could get chemo underway. Had a new one later, but you really never know. Could be some minor infection or inflammation bumped number up.

    Own every day and relish feeling good!!! Keep your days busy, a getaway would be great, any diversion you can find. Sending positive thoughts your way.
    Big Cyber Hug to you, Annie
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Hi Norma:
    Sorry you are

    Hi Norma:

    Sorry you are feeling anxious. The small rise could be anything from an infection or maybe just a wrong reading.

    I know what you mean, though, about how you felt when you were first diagnosed and when you go to the doctors now. It's like when the phone rings and you see the caller ID and it is from your doctor's office, I like "freak" out sometimes, and it could be something so silly why they are calling.

    Go with what your hubby says and just wait for the CT Scan results. If the doctor's were that concern about the rise in CA125, they wouldn't have given you a choice to wait to do another CA125 or have a CT Scan done.

    Its that same thing when you're NED; we are always waiting for the "other shoe to drop" instead of just enjoying life. We let a number tell us how to feel. Before the doctor told you your CA125, you were feeling great and enjoying stuff and not worrying. So keep doing that, ok?

    My best to you!

    Kathy
  • norma2
    norma2 Member Posts: 479
    Kaleena said:

    Hi Norma:
    Sorry you are

    Hi Norma:

    Sorry you are feeling anxious. The small rise could be anything from an infection or maybe just a wrong reading.

    I know what you mean, though, about how you felt when you were first diagnosed and when you go to the doctors now. It's like when the phone rings and you see the caller ID and it is from your doctor's office, I like "freak" out sometimes, and it could be something so silly why they are calling.

    Go with what your hubby says and just wait for the CT Scan results. If the doctor's were that concern about the rise in CA125, they wouldn't have given you a choice to wait to do another CA125 or have a CT Scan done.

    Its that same thing when you're NED; we are always waiting for the "other shoe to drop" instead of just enjoying life. We let a number tell us how to feel. Before the doctor told you your CA125, you were feeling great and enjoying stuff and not worrying. So keep doing that, ok?

    My best to you!

    Kathy

    {{Kathy and Annie}}}
    You have no idea how conforting your words are to me. Being with those who are going through the same thing is a great help. Annie, you hit the nail on the head. When I was first diagnosed I didn't have as much fear as I do now. Waiting for the other shoe to drop is exactly what I was doing, Kathy. I just got up and can't sleep. Haunting the internet for some word that will tell me it will be ok. Next week I go to Houston on Monday and will have the tests done on Tue. Get the results from my onc/gyncologist Dr. Levenbach on Wed. So I will know then. Until then I have the weekend to enjoy. When first diagnosed my mantra was one day at a time. Then, with hearing the wonderful words you are NED I pushed the idea of cancer out of my head. I have to keep reminding myself that all I really have is today. Not to ruin it by worrying and missing the precious fact that I have today. I have no symptoms. I am in great health. So much to be thankful for. Especially the wonderful angels here. Thanks you so much for your words. They helped me a great deal.
  • susangr
    susangr Member Posts: 64
    norma2 said:

    {{Kathy and Annie}}}
    You have no idea how conforting your words are to me. Being with those who are going through the same thing is a great help. Annie, you hit the nail on the head. When I was first diagnosed I didn't have as much fear as I do now. Waiting for the other shoe to drop is exactly what I was doing, Kathy. I just got up and can't sleep. Haunting the internet for some word that will tell me it will be ok. Next week I go to Houston on Monday and will have the tests done on Tue. Get the results from my onc/gyncologist Dr. Levenbach on Wed. So I will know then. Until then I have the weekend to enjoy. When first diagnosed my mantra was one day at a time. Then, with hearing the wonderful words you are NED I pushed the idea of cancer out of my head. I have to keep reminding myself that all I really have is today. Not to ruin it by worrying and missing the precious fact that I have today. I have no symptoms. I am in great health. So much to be thankful for. Especially the wonderful angels here. Thanks you so much for your words. They helped me a great deal.

    Hoping too this is just a
    Hoping too this is just a rise due to something other than a recurrence. I am at MDA and Dr. L is my doctor too. I go back
    June 6th for another check up. I find it hard to put the worry out of my mind as the time approaches even though I know that it is what it is and my husband and I will deal with it the best we can whatever it is. Hoping for a positive outcome for you. Susan
  • norma2
    norma2 Member Posts: 479
    susangr said:

    Hoping too this is just a
    Hoping too this is just a rise due to something other than a recurrence. I am at MDA and Dr. L is my doctor too. I go back
    June 6th for another check up. I find it hard to put the worry out of my mind as the time approaches even though I know that it is what it is and my husband and I will deal with it the best we can whatever it is. Hoping for a positive outcome for you. Susan

    Hoping it is a change in the Ca 125 test
    I know this sounds like denial. Well, ok it is denial. I am praying it is the change in CA 125 test they implemented in Feb. It is on the print out that there was a change in methodology.

    If not I feel confident that I am in the best place there at MD Anderson. Dr. L is a good doctor. He doesn't paint a rosy picture. Just tells the facts good or bad. When I was diagnosed he was like that. Last visit in Jan. He said I was doing so well that I didn't have to come back for 4 mos instead of the usual 3. So here we are.

    Best to you Susan. I hope your check up goes well. Thanks for writing. I am up late. Your note helped me greatly. I appreciate it.

    Praying is helping. I am asking God to give me the peace I first had when diagnosed. It is in God's hands. I feel like I have been healed. I feel great. Except for the anxiety of wondering I feel better than I have in years. Ran up two flights of steps the other day and wasn't even breathing hard. Work 12 hours a day and still have plenty energy at the end of a day. Guess we never have a definite answer. It is always a matter of faith.

    Good thing is I found a shuttle bus that will take me to Houston from Beaumont. The price is less than we would spend on gas and hubby can stay and run our business. So any trips I have to make for treatment, blood work, or chemo I can do on my own. I don't drive on the interstate. Another story for another day.
  • lkchapman
    lkchapman Member Posts: 106
    norma2 said:

    Hoping it is a change in the Ca 125 test
    I know this sounds like denial. Well, ok it is denial. I am praying it is the change in CA 125 test they implemented in Feb. It is on the print out that there was a change in methodology.

    If not I feel confident that I am in the best place there at MD Anderson. Dr. L is a good doctor. He doesn't paint a rosy picture. Just tells the facts good or bad. When I was diagnosed he was like that. Last visit in Jan. He said I was doing so well that I didn't have to come back for 4 mos instead of the usual 3. So here we are.

    Best to you Susan. I hope your check up goes well. Thanks for writing. I am up late. Your note helped me greatly. I appreciate it.

    Praying is helping. I am asking God to give me the peace I first had when diagnosed. It is in God's hands. I feel like I have been healed. I feel great. Except for the anxiety of wondering I feel better than I have in years. Ran up two flights of steps the other day and wasn't even breathing hard. Work 12 hours a day and still have plenty energy at the end of a day. Guess we never have a definite answer. It is always a matter of faith.

    Good thing is I found a shuttle bus that will take me to Houston from Beaumont. The price is less than we would spend on gas and hubby can stay and run our business. So any trips I have to make for treatment, blood work, or chemo I can do on my own. I don't drive on the interstate. Another story for another day.

    CA125
    Hi Norma,
    I am also a patient at MDA and just had my 4 month checkup. My CA 125 had doubled from the previous reading also. I really do think it is probably the new testing method they are using. Hang in there!

    Laura
  • HellieC
    HellieC Member Posts: 524 Member
    norma2 said:

    Hoping it is a change in the Ca 125 test
    I know this sounds like denial. Well, ok it is denial. I am praying it is the change in CA 125 test they implemented in Feb. It is on the print out that there was a change in methodology.

    If not I feel confident that I am in the best place there at MD Anderson. Dr. L is a good doctor. He doesn't paint a rosy picture. Just tells the facts good or bad. When I was diagnosed he was like that. Last visit in Jan. He said I was doing so well that I didn't have to come back for 4 mos instead of the usual 3. So here we are.

    Best to you Susan. I hope your check up goes well. Thanks for writing. I am up late. Your note helped me greatly. I appreciate it.

    Praying is helping. I am asking God to give me the peace I first had when diagnosed. It is in God's hands. I feel like I have been healed. I feel great. Except for the anxiety of wondering I feel better than I have in years. Ran up two flights of steps the other day and wasn't even breathing hard. Work 12 hours a day and still have plenty energy at the end of a day. Guess we never have a definite answer. It is always a matter of faith.

    Good thing is I found a shuttle bus that will take me to Houston from Beaumont. The price is less than we would spend on gas and hubby can stay and run our business. So any trips I have to make for treatment, blood work, or chemo I can do on my own. I don't drive on the interstate. Another story for another day.

    Hoping and praying for you Norma
    Like everyone else , I am hoping that it is just the new test method that is causing the blip in the result. I am sure we all feel the same about "waiting for the other shoe to drop". We know we need to get on with our daily lives and cherish every day but the shadow of recurrence is always in the background. I hope you can find a way to get through the next few days until you know the results. Try to turn your face to the sun and let the shadow fall behind you. (Easy to say, but not so easy to do - I know).
    Thinking and praying for you
    Helen
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    HellieC said:

    Hoping and praying for you Norma
    Like everyone else , I am hoping that it is just the new test method that is causing the blip in the result. I am sure we all feel the same about "waiting for the other shoe to drop". We know we need to get on with our daily lives and cherish every day but the shadow of recurrence is always in the background. I hope you can find a way to get through the next few days until you know the results. Try to turn your face to the sun and let the shadow fall behind you. (Easy to say, but not so easy to do - I know).
    Thinking and praying for you
    Helen

    Sending hugs and prayers
    By this time next week the CT scan will be behind you and you'll know the results. I'm banking on the number being the result of the new testing. Even if you do have a recurrence, your general health sounds terrific and you'll be up for whatever treatment is sent your way.

    In the meantime (and always), you have our love and support whether you can get onto this site or not. What's with that, anyway? I've had problems the last couple of nights as well.

    Suzanne
  • kkstef
    kkstef Member Posts: 688 Member
    norma2 said:

    Hoping it is a change in the Ca 125 test
    I know this sounds like denial. Well, ok it is denial. I am praying it is the change in CA 125 test they implemented in Feb. It is on the print out that there was a change in methodology.

    If not I feel confident that I am in the best place there at MD Anderson. Dr. L is a good doctor. He doesn't paint a rosy picture. Just tells the facts good or bad. When I was diagnosed he was like that. Last visit in Jan. He said I was doing so well that I didn't have to come back for 4 mos instead of the usual 3. So here we are.

    Best to you Susan. I hope your check up goes well. Thanks for writing. I am up late. Your note helped me greatly. I appreciate it.

    Praying is helping. I am asking God to give me the peace I first had when diagnosed. It is in God's hands. I feel like I have been healed. I feel great. Except for the anxiety of wondering I feel better than I have in years. Ran up two flights of steps the other day and wasn't even breathing hard. Work 12 hours a day and still have plenty energy at the end of a day. Guess we never have a definite answer. It is always a matter of faith.

    Good thing is I found a shuttle bus that will take me to Houston from Beaumont. The price is less than we would spend on gas and hubby can stay and run our business. So any trips I have to make for treatment, blood work, or chemo I can do on my own. I don't drive on the interstate. Another story for another day.

    Hoping for GOOD NEWS!
    Norma, I can understand your anxiety, but I really feel the change in the testing methodology may be the culprit here! You sound like the picture of health with a bundle of energy.

    Will be waiting to hear what you find out. In the meantime, try to distract yourself with fun things to do and positive thoughts.

    Hugs, Karen
  • Ro10
    Ro10 Member Posts: 1,561 Member
    Norma sorry to hear about your rise in CA 125
    As others have said the rise could be the new testing procedure, inflammation or other reasons. I hope the CAT scan will be negative and you can have peace of mind again. I know the waiting can be so hard. Waiting for the tests and then waiting for the results.

    You are at a good place with MD Anderson. I hope you can find some things to distract you until you get your results. I pray that you will continue to be NED. In peace and caring.
  • norma2
    norma2 Member Posts: 479
    lkchapman said:

    CA125
    Hi Norma,
    I am also a patient at MDA and just had my 4 month checkup. My CA 125 had doubled from the previous reading also. I really do think it is probably the new testing method they are using. Hang in there!

    Laura

    I am so glad you wrote this, Laura.
    Thank You!!! for writing and letting me know about your CA 125 at MDA. My gut tells me it is a change in the testing. 41 is still above average but if the new test is more sensitive it would seem to reason it shifts the whole thing upward slightly. Maybe I can give you a hug in person if we see each other for visits. Thanks so much!!!!
  • norma2
    norma2 Member Posts: 479
    HellieC said:

    Hoping and praying for you Norma
    Like everyone else , I am hoping that it is just the new test method that is causing the blip in the result. I am sure we all feel the same about "waiting for the other shoe to drop". We know we need to get on with our daily lives and cherish every day but the shadow of recurrence is always in the background. I hope you can find a way to get through the next few days until you know the results. Try to turn your face to the sun and let the shadow fall behind you. (Easy to say, but not so easy to do - I know).
    Thinking and praying for you
    Helen

    Helen, beautifully written.
    Your message was so beautiful! I have reread it many times. It gives me great comfort and hope.
  • norma2
    norma2 Member Posts: 479

    Sending hugs and prayers
    By this time next week the CT scan will be behind you and you'll know the results. I'm banking on the number being the result of the new testing. Even if you do have a recurrence, your general health sounds terrific and you'll be up for whatever treatment is sent your way.

    In the meantime (and always), you have our love and support whether you can get onto this site or not. What's with that, anyway? I've had problems the last couple of nights as well.

    Suzanne

    {{{Suzanne}}}
    I know that I will have to deal with whatever the results. You are soooooo right. The love and support here is a God send. I am reading these responses and they are such a huge comfort. Thank YOU!!!!
  • norma2
    norma2 Member Posts: 479
    kkstef said:

    Hoping for GOOD NEWS!
    Norma, I can understand your anxiety, but I really feel the change in the testing methodology may be the culprit here! You sound like the picture of health with a bundle of energy.

    Will be waiting to hear what you find out. In the meantime, try to distract yourself with fun things to do and positive thoughts.

    Hugs, Karen

    HUGS back to you, Karen
    I am so blessed to have wonderful ladies like yourself with which to share. I will try and take your advice. I have not slept much in the past few days. I think too much. Always trying to control things. I have to just give myself up sometimes that I am not in control. Your sweet message really has helped me. Thanks for taking the time. It is so very appreciated!!!!
  • norma2
    norma2 Member Posts: 479
    Ro10 said:

    Norma sorry to hear about your rise in CA 125
    As others have said the rise could be the new testing procedure, inflammation or other reasons. I hope the CAT scan will be negative and you can have peace of mind again. I know the waiting can be so hard. Waiting for the tests and then waiting for the results.

    You are at a good place with MD Anderson. I hope you can find some things to distract you until you get your results. I pray that you will continue to be NED. In peace and caring.

    {{{RO}}}
    MD Anderson is really a great place. Thanks for reminding me. You are so right. I know they have lots of resources there for me to use. I have to stay positive. Stay focused. I know everything happens for a reason. Guess I am not seeing the reason here yet. I should spend the time cleaning the house this weekend. That will take my mind off of things. Haven't changed the drapes in the living room in a long time. Spring cleaning may be just the ticked to take my mind off of things. A reminder that life goes on.

    Thanks so much for your kindness. I also have been praying for you, dear. It is times like these that I am so thankful to have this place.
  • norma2
    norma2 Member Posts: 479
    norma2 said:

    {{{RO}}}
    MD Anderson is really a great place. Thanks for reminding me. You are so right. I know they have lots of resources there for me to use. I have to stay positive. Stay focused. I know everything happens for a reason. Guess I am not seeing the reason here yet. I should spend the time cleaning the house this weekend. That will take my mind off of things. Haven't changed the drapes in the living room in a long time. Spring cleaning may be just the ticked to take my mind off of things. A reminder that life goes on.

    Thanks so much for your kindness. I also have been praying for you, dear. It is times like these that I am so thankful to have this place.

    DEAR, SWEET, WONDERFUL LADIES
    To all of you that wrote, and those who, like myself at times, send their messages in a silent prayer.

    THANK YOU!! Your comfort in this time has lifted my spirit. I feel so much better having read your responses.

    I am humbled and blessed to have you warrior ladies who send strength, wise counsel, and share your hearts with each other.

    In deep gratitude and returning the good wishes, love, and prayer back to all of you.

    Will let you know the results. Whatever comes my way it makes all the difference to know that I have you ladies wishing me well. Love you, sisters in the fight. May we all find peace and healing.
  • Songflower
    Songflower Member Posts: 608
    norma2 said:

    DEAR, SWEET, WONDERFUL LADIES
    To all of you that wrote, and those who, like myself at times, send their messages in a silent prayer.

    THANK YOU!! Your comfort in this time has lifted my spirit. I feel so much better having read your responses.

    I am humbled and blessed to have you warrior ladies who send strength, wise counsel, and share your hearts with each other.

    In deep gratitude and returning the good wishes, love, and prayer back to all of you.

    Will let you know the results. Whatever comes my way it makes all the difference to know that I have you ladies wishing me well. Love you, sisters in the fight. May we all find peace and healing.

    Waiting for Results is the Toughest
    Deaer Norma,

    I wish I could make your waiting time easier. It is always the hardest time for me but I use complete denial. I black it out from my mind and do things. I know there is hidden hibee jibees when I do this but most often it works and gives my family some relaxed time when they see I'm not falling apart. I prayed for everyone last night. All of us.

    Diane
  • norma2
    norma2 Member Posts: 479

    Waiting for Results is the Toughest
    Deaer Norma,

    I wish I could make your waiting time easier. It is always the hardest time for me but I use complete denial. I black it out from my mind and do things. I know there is hidden hibee jibees when I do this but most often it works and gives my family some relaxed time when they see I'm not falling apart. I prayed for everyone last night. All of us.

    Diane

    I am trying to completely block it out.
    Dear Diane,
    Blocking it out. Then wham I hits me again. Denial. Denial. Denial right now. We are taking a ride to Galveston this afternoon. Having a picnic on the beach and looking for seashells. Hubby is so sweet.

    I thank you so much for your prayers. I read your posts all the time and pray for you. I know your daughter's wedding will be beautiful.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    norma2 said:

    I am trying to completely block it out.
    Dear Diane,
    Blocking it out. Then wham I hits me again. Denial. Denial. Denial right now. We are taking a ride to Galveston this afternoon. Having a picnic on the beach and looking for seashells. Hubby is so sweet.

    I thank you so much for your prayers. I read your posts all the time and pray for you. I know your daughter's wedding will be beautiful.

    Now, wait a minute!
    You change the drapes in the living room? How often do you do that? Or does this mean you're going to get new ones?

    Inquiring minds . . .
    Suzanne
  • norma2
    norma2 Member Posts: 479

    Now, wait a minute!
    You change the drapes in the living room? How often do you do that? Or does this mean you're going to get new ones?

    Inquiring minds . . .
    Suzanne

    You are cracking me up, Suzanne.
    I took the easy way out and went to walk on the beach instead of cleaning and changing out the drapes. Might get new ones next week. Daughter and grandbaby coming for a visit for Memorial Day. Took a lovely nap this afternoon. Feeling better.

    I guess I am into the fighting and anger stage right now. I feel great. Better than I have in years. Doesn't make sense that some stupid, arbitrary number can steal away my sense of well-being. I have to get a grip on this whole thing. Praying for the peace that I had in the beginning when this whole thing went down in 2009. I was reconciled to whatever would happen. Surgery, chemo, radiation, you guys know the drill. I recovered from all of that and am feeling like a million dollars!!!! This cancer is not going to win. I am going to find a way to beat it. Find a way to get on top of this whole thing with God's help. Good gracious!!! I sound like Scarlett O'Hara....have to reign in that southern girl thing a bit.

    Looked at the schedule at MDA in the Integrative Medicine section and the day I have to go for the results I can go to have a massage and do a Laughter Yoga Class that morning. There has to be a silver lining somewhere. By golly!!! I am going to find it.

    Love you guys!!! You are the best.