CA -125 continues to rise

Ro10
Ro10 Member Posts: 1,561 Member
edited March 2014 in Uterine/Endometrial Cancer #1
Had my follow-up lab and CAT scan on June 1. Took others advice and went for my results today, as my doctor's appointment is Tuesday, June 8. Did not want to wait until Tuesday for the results. It has been 8 weeks since I had the tests done. My CA-125 was 140 then, and now it is 261. I did not like that it had raised so much in 8 weeks. However the CAT scan did not show any change in the nodules in my lung, and they did not even address the two other suspicious areas. The final results said "No significant change or evidence for recurrence". That was great news. My gyn/ono in Florida does not treat a number, but only if the CAT scan shows something, or if I am symptomatic. He said that some people's CA 125 stabilize in the hundreds. I hope I am one of those, but wish the number would quit rising.

I go Tuesday to my medical onocologist in Illinois, so I will see what she says. I am hoping for more months of observation. In the mean time I will continue with the green tea, healthy eating, exercise and meditation. I am beginning yoga, also.

Hope you all have a good weekend. In peace and caring.

Comments

  • kathybd
    kathybd Member Posts: 126
    #2
    CA-125
    Eight weeks...that is terrible! Hang onto that No evidence of recuurenc and no significant change, Ro. Keep the faith and continue as you are doing. Thoughts and prayers with you always.

    Best,
    Kathy
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #3
    Ro
    I understand your anxiety about the rise in numbers. Like you said, I hope that you are one of those that stabilizes in the higher numbers. My doc last told me we will look at "trends" in my CA125 - you will have time to discuss this with your doc on Tuesday.

    I think you have a very positive attitude and are remaining calm. Do you think nurses are better patients???

    What did you do to get the results so quick? go to the place that did the testing and get directly from them?

    You are in my thoughts are prayers, Mary Ann
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #4
    daisy366 said:

    Ro
    I understand your anxiety about the rise in numbers. Like you said, I hope that you are one of those that stabilizes in the higher numbers. My doc last told me we will look at "trends" in my CA125 - you will have time to discuss this with your doc on Tuesday.

    I think you have a very positive attitude and are remaining calm. Do you think nurses are better patients???

    What did you do to get the results so quick? go to the place that did the testing and get directly from them?

    You are in my thoughts are prayers, Mary Ann

    Thanks for your thoughts and prayers
    No I do not think nurses are better patients. We know way too much. It is better not to know so much sometimes.

    I went to the clinic where the lab and CAT scan were done. I called the medical records department first to make sure the results were available. I had to sign a release of information form. They charge 92 cents per page for the reports. Had to show a photo ID. And they gave me the reports. Someone on this discussion board had said they always go and pick up their results before they go to the doctor, so I thought I would do that. As we all know the waiting for the results is the worse time.

    I waited until I got home to look at them. My husband has hurt his knee, so he did not go with me. When I came home, he said "Well????". Told him I had not looked at the results yet. I told him "You know how I am.....I cry with good results, and I cry with bad results, so I did not want to cry while I was driving." Those tears just come so easily whether it is good or bad news. Have always been like that.

    I am trying to keep a positive attitude and remain calm. My sister told me to celebrate the news. I think each day is a day to celebrate. Hope you are doing well Mary Ann. In peace and caring.
  • norma2
    norma2 Member Posts: 479
    #5
    Ro10 said:

    Thanks for your thoughts and prayers
    No I do not think nurses are better patients. We know way too much. It is better not to know so much sometimes.

    I went to the clinic where the lab and CAT scan were done. I called the medical records department first to make sure the results were available. I had to sign a release of information form. They charge 92 cents per page for the reports. Had to show a photo ID. And they gave me the reports. Someone on this discussion board had said they always go and pick up their results before they go to the doctor, so I thought I would do that. As we all know the waiting for the results is the worse time.

    I waited until I got home to look at them. My husband has hurt his knee, so he did not go with me. When I came home, he said "Well????". Told him I had not looked at the results yet. I told him "You know how I am.....I cry with good results, and I cry with bad results, so I did not want to cry while I was driving." Those tears just come so easily whether it is good or bad news. Have always been like that.

    I am trying to keep a positive attitude and remain calm. My sister told me to celebrate the news. I think each day is a day to celebrate. Hope you are doing well Mary Ann. In peace and caring.

    I think your sister gave you good advice.
    I like the idea of celebrating each day. Stay positive, RO! I hope the rise in the CA125 is nothing to worry about. Praying for you!!!
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #6
    ca 125

    ro, i think it's a great thing that your doctor doesn't just rush in with something because the notoriously unreliable ca125 is rising, but no symptoms and no changes or evidence for recurrence. that is truly good news; though i can understand why the rising ca 125 could cause you, hopefully, only momentary stress. it really may well be that your new normal is now around 260 or so. hopefully, your med-onc will agree with your gyn-onc, and you'll get lots more months of observation. sounds like we're all doing green tea, healthy eating, exercise and mediation; may they show great results for all of us. please let us know what happens on tuesday.

    sisterhood,
    maggie
  • upsofloating
    upsofloating Member Posts: 466 Member
    #7
    At recent visit with
    At recent visit with gyn-onc, his comment regarding CA125 was that the absolute value wasn't relevant only trends: trending upward, trending downward; doubling, halving most notably significant. However a single rise can be attributable to other causes and therefore would not yet be considered a 'trend.' With your good scan scan results, it could merely be an aberration. Sending positive thoughts your way, a former nurse as well ;-), Annie
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #8
    Ro 10
    Ro,
    How are you? You mentioned your oncologist in IL....I am from IL.
    Are you FL or IL based?
  • jazzy1
    jazzy1 Member Posts: 1,379
    #9
    hopeful girl 1 said:

    Ro 10
    Ro,
    How are you? You mentioned your oncologist in IL....I am from IL.
    Are you FL or IL based?

    Location
    Where in IL? I'm in St Louis....
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #10
    hopeful girl 1 said:

    Ro 10
    Ro,
    How are you? You mentioned your oncologist in IL....I am from IL.
    Are you FL or IL based?

    I live in Quincy
    We spend our summers in Illinois and our winters in Florida. Florida is where I had my robotic surgery and my first three chemo treatments. Then it was time to come back to Illinois, so I had my radiation treatments and my last 3 chemo treatments in Illinois.

    My CA 125 has gradually increased since I had my last chemo in August. It was 18 with the last two chemo. It has been a gradual increase since October from 39, 55, 77, 119, 140, and now 261. These have been every 6- 8 weeks. I will be interested to see what the onocologist says tomorrow.

    Where are you in Illinois. Jan where in St. Louis.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #11
    Ro10 said:

    I live in Quincy
    We spend our summers in Illinois and our winters in Florida. Florida is where I had my robotic surgery and my first three chemo treatments. Then it was time to come back to Illinois, so I had my radiation treatments and my last 3 chemo treatments in Illinois.

    My CA 125 has gradually increased since I had my last chemo in August. It was 18 with the last two chemo. It has been a gradual increase since October from 39, 55, 77, 119, 140, and now 261. These have been every 6- 8 weeks. I will be interested to see what the onocologist says tomorrow.

    Where are you in Illinois. Jan where in St. Louis.

    (((Ro)))). Let us know what they say tomorrow.
    The 2 of us both have big days tomorrow, so I will be thinking of you as I go through my scary appointment. I'm back from my wonderful cruise and back to the reality of cancer. Tomorrow I am to have a sonogram-guided needle biopsy of that lymph node under my arm, IF they can find it with the sonogram. I can't feel it and neither could my gyne-onc. It's 1.0 x 1.3 cm so it must be up pretty high inside my armpit. This will be a brand-new oncologist I've never met that specializes in breast cancer; I was sent to him because he has the most experience with nodes within the armpit. I am hoping this will result in a "wait-and-see-what-happens" treatment plan, but am resigned to the possibility of surgery and/or chemo later this month. We'll see.

    Holding hands with you across the miles,.Ro. (((((hugs)))))
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #12
    lindaprocopio said:

    (((Ro)))). Let us know what they say tomorrow.
    The 2 of us both have big days tomorrow, so I will be thinking of you as I go through my scary appointment. I'm back from my wonderful cruise and back to the reality of cancer. Tomorrow I am to have a sonogram-guided needle biopsy of that lymph node under my arm, IF they can find it with the sonogram. I can't feel it and neither could my gyne-onc. It's 1.0 x 1.3 cm so it must be up pretty high inside my armpit. This will be a brand-new oncologist I've never met that specializes in breast cancer; I was sent to him because he has the most experience with nodes within the armpit. I am hoping this will result in a "wait-and-see-what-happens" treatment plan, but am resigned to the possibility of surgery and/or chemo later this month. We'll see.

    Holding hands with you across the miles,.Ro. (((((hugs)))))

    Good luck tomorrow Linda
    I hope that all goes well for you with the biopsy. Hopefully they can find it with the sonogram, and are able to reach it for the biopsy. I know that would give you a lot of comfort to know exactly what you are dealing with.

    I love your new picture of you and your husband. You both look wonderful. You look so beautiful. I am glad you had a wonderful cruise. It was well deserved. You remain in my prayers. In peace and caring.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #13
    Ro10 said:

    Good luck tomorrow Linda
    I hope that all goes well for you with the biopsy. Hopefully they can find it with the sonogram, and are able to reach it for the biopsy. I know that would give you a lot of comfort to know exactly what you are dealing with.

    I love your new picture of you and your husband. You both look wonderful. You look so beautiful. I am glad you had a wonderful cruise. It was well deserved. You remain in my prayers. In peace and caring.

    thinking of you both tomorrow ro and linda

    wishing and hoping that all goes well for both of you tomorrow, and that each of you has the best results possible. surrounding you both with auras of white healing light.

    sisterhood,
    maggie
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #14
    maggie_wilson said:

    thinking of you both tomorrow ro and linda

    wishing and hoping that all goes well for both of you tomorrow, and that each of you has the best results possible. surrounding you both with auras of white healing light.

    sisterhood,
    maggie

    Thank you for all the good thoughts and comments
    I went to the doctor Tuesday afternoon. She agrees we will repeat the tests in 2 months and see what is happening. There is no trend with my CA 125 other than it continues to rise. She too said that some people have high CA 125's before anything shows on the CAT scan. The good news is that the CAT scan shows no changes. She agreed I would probably need more treatment, just not sure when.

    I expressed concern over the frequency of the CAT scans I have had over the last year. I had three abdominal/pelvis scans due to the abscess I had in June. (One to find the abscess, one for the CT guided drainage, and a third to follow up before I had my next chemo). Then beginning in October I have had 5 since then. She said the cancer I have is more of a threat than the risk of radiation. She said we want to start treatment at the appopriate time. She reassured me before we would proceed with treatment she would consult with the GYN/ono in Florida.

    So I have another 2 months of freedom from treatments. I will go to my gynecologist for an exam in July. I am not sure if she will do just an exam or a PAP. Are others who have finished treatments having a PAP done more than yearly?

    Linda I am glad you had a great cruise. Glad the biopsy went well, too. I hope everything comes back okay from the biopsy. In peace and caring.
  • kansasgal
    kansasgal Member Posts: 122 Member
    #15
    Ro10 said:

    Thank you for all the good thoughts and comments
    I went to the doctor Tuesday afternoon. She agrees we will repeat the tests in 2 months and see what is happening. There is no trend with my CA 125 other than it continues to rise. She too said that some people have high CA 125's before anything shows on the CAT scan. The good news is that the CAT scan shows no changes. She agreed I would probably need more treatment, just not sure when.

    I expressed concern over the frequency of the CAT scans I have had over the last year. I had three abdominal/pelvis scans due to the abscess I had in June. (One to find the abscess, one for the CT guided drainage, and a third to follow up before I had my next chemo). Then beginning in October I have had 5 since then. She said the cancer I have is more of a threat than the risk of radiation. She said we want to start treatment at the appopriate time. She reassured me before we would proceed with treatment she would consult with the GYN/ono in Florida.

    So I have another 2 months of freedom from treatments. I will go to my gynecologist for an exam in July. I am not sure if she will do just an exam or a PAP. Are others who have finished treatments having a PAP done more than yearly?

    Linda I am glad you had a great cruise. Glad the biopsy went well, too. I hope everything comes back okay from the biopsy. In peace and caring.

    PAP Frequency
    Hi, Ro!

    Glad you have the 2-month reprieve and I hope you get more!

    I have a PAP every 3-4 months at my check-ups. I have had 2 CTs, the most recent in April. My next one will be April 2011 unless I develop symptoms sooner. Following TAH (9 lymph nodes checked, peritoneal fluid checked, omentum NOT removed) in April 2009, I was Dx with UPSC 1a (grade 3) and endometrial adenocarcinoma 1b (grade 2). I had 6 rounds of Carbo/Taxol 6/09-10/09 and 3 rounds of brachytherapy 8/09-9/09. No external radiation.

    I keep watching for your posts and hoping for your CA-125 level to stabilize. My CA-125 has only been assessed once, and that was post all treatments. It was 6 (thank goodness). If I develop symptoms, I will be sure to ask for it to be looked at again to see if perhaps it is a marker for me.

    Sally
  • kathybd
    kathybd Member Posts: 126
    #16
    kansasgal said:

    PAP Frequency
    Hi, Ro!

    Glad you have the 2-month reprieve and I hope you get more!

    I have a PAP every 3-4 months at my check-ups. I have had 2 CTs, the most recent in April. My next one will be April 2011 unless I develop symptoms sooner. Following TAH (9 lymph nodes checked, peritoneal fluid checked, omentum NOT removed) in April 2009, I was Dx with UPSC 1a (grade 3) and endometrial adenocarcinoma 1b (grade 2). I had 6 rounds of Carbo/Taxol 6/09-10/09 and 3 rounds of brachytherapy 8/09-9/09. No external radiation.

    I keep watching for your posts and hoping for your CA-125 level to stabilize. My CA-125 has only been assessed once, and that was post all treatments. It was 6 (thank goodness). If I develop symptoms, I will be sure to ask for it to be looked at again to see if perhaps it is a marker for me.

    Sally

    paps
    I have paps every 3 months for 2 years. Hope the rise is due to some other cause, Ro!
    Keeping you in my prayers,
    Kathy

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