Five years NED...I think?

debrajo
debrajo Member Posts: 1,095 Member
in Uterine/Endometrial Cancer #1

Yes, I am still among the living!  Been a rough four months.  Had my third open heart sugrery March 31.  Still recuperating and it is taking much longer this time.  Had my fifth year check up April 24.  I don't know if I am stilll NED or about to reacure.  CA 125 had gone from 15 to 30, but the doctor was so freaked out about my heart, the surgery, and the fact my heart rate was 140 in her  office thst she just calked the CA125 rise to trauma.  She actualy stood in the door and wouldn't let me leave til the cardiologist checked me out! I am not supposed to get another check up for a year.  Now, I am unsure weither to push for another CA125 test once my heart settles down or just wait.   Not exactly the "joyous" event I had expected!  So, suggestions Ladies?  Debrajo

Comments

  • Hybridspirits
    Hybridspirits Member Posts: 209
    #2
    great on 5 years

    wow you have gone through a lot lately and glad to hear you are on the rebound.   I hope things start getting back to normal and you can enjoy the spring/summer coming up.   I am a believer in doing anything and everything you need to feel comfortable things are on the right track. The CA125 is a simple blood test and any dr could include it with a blood order.  SOunds like just to put yourself at ease and not have to wonder would be a great idea. However,  I have heard that it can spike all depending on things that day unrealted to cancer.  So to get a piece of mind ask your Dr for a script out maybe at 3 or 6 mnths.  Just my thoughts

     

    keeping you in my thoughts for continued recovery from your recent surgery.  Also congrats on the 5 years,  I think that is worth a little celebration

     

     

     

     

  • Kathy G.
    Kathy G. Member Posts: 245 Member
    #3
    Hey DebraJo!
    So RELIEVED to

    Hey DebraJo!

    So RELIEVED to hear from you! Was really getting worried.

    Of course I know nothing about CA levels, etc. due to my cancer being so early stage, but is there a possibility they may rise due to the major stress open heart surgery imposes on your body? I am sure any lab work goes bonkers during that time period. Most diseases affect our red & white blood counts & other levels. I don't know...kinda grasping here and I am sure the more experienced ladies can share their knowledge.

    I am sorry you are having such a difficult recovery from your surgery. However, based on what you said that seems to be understandable....the culmitive toll those surgeries have on your body. I know this is the cancer board, but I have had a far harder time with my heart than I did with the cancer. It is 'only' atrial fillibration, but when they caught it I apparently had it for quite some time. I have it 24-7. the past year they have been trying differnt treatments to get my heart rate under 100...it was going as high as 180 for periods of time. Then, I thought it was the high heart rate that was causing my significant fatigue, but found it was one of the betablockers they put me on.

    So I have an idea of how difficult dealing with heart issues can be...the level of fatigue caught me so off guard...I was literally sleeping 12 hours a day sometimes.

    I wish you a speedy recovery...I know you had so much on your plate and were a major caretaker...so please take care of yourself and keep us updated.

    Kathy

     

  • debrajo
    debrajo Member Posts: 1,095 Member
    #4
    Kathy G. said:

    Hey DebraJo!
    So RELIEVED to

    Hey DebraJo!

    So RELIEVED to hear from you! Was really getting worried.

    Of course I know nothing about CA levels, etc. due to my cancer being so early stage, but is there a possibility they may rise due to the major stress open heart surgery imposes on your body? I am sure any lab work goes bonkers during that time period. Most diseases affect our red & white blood counts & other levels. I don't know...kinda grasping here and I am sure the more experienced ladies can share their knowledge.

    I am sorry you are having such a difficult recovery from your surgery. However, based on what you said that seems to be understandable....the culmitive toll those surgeries have on your body. I know this is the cancer board, but I have had a far harder time with my heart than I did with the cancer. It is 'only' atrial fillibration, but when they caught it I apparently had it for quite some time. I have it 24-7. the past year they have been trying differnt treatments to get my heart rate under 100...it was going as high as 180 for periods of time. Then, I thought it was the high heart rate that was causing my significant fatigue, but found it was one of the betablockers they put me on.

    So I have an idea of how difficult dealing with heart issues can be...the level of fatigue caught me so off guard...I was literally sleeping 12 hours a day sometimes.

    I wish you a speedy recovery...I know you had so much on your plate and were a major caretaker...so please take care of yourself and keep us updated.

    Kathy

     

    Thanks Hybrid and Kathy!  

    Thanks Hybrid and Kathy!   You are so right Kathy, this heart has caused me more trouble than the cancer ever did.  My problen is genetic birth defect of the aortic valve and all the veins and arteries on the left side of my body being too small.  They thought I was having afib too but it seems to be an "electronic" missfire of nerves in my heart.  They increased my beta blocker and I've gotten it down from 140 to 77.  Never even knew I had a malformed valve til I got cancer! I really do think the rapid beat can tire you out...it does me and I do sleep about 9 hours a night just to function!

     

    @ Hybride, I talked to my PCP about getting a CA125 done if M.D. Anderson wont do another one before next years check up.  He said to let everything settle down a bit and he'd run one, just for my peace of mind.  I see him in August so will maybe get it then.  I go back to Houston June 19 for cardiac ultra sound

     

    Thanks again for replying and caring!  Debra

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #5
    Debrajo

    good to hear from you.  Sorry to hear you had to have another heart surgery.   Glad you are recovering from it.  Congratulations on passing your 5 year mark of surviving cancer.   You have had many bumps in the road to get over.  taking care of  your  Mother having a child leave for college and now another surgery. May you continue to heal and get stronger each day.  In peace and caring.

  • Hybridspirits
    Hybridspirits Member Posts: 209
    #6
    debrajo said:

    Thanks Hybrid and Kathy!  

    Thanks Hybrid and Kathy!   You are so right Kathy, this heart has caused me more trouble than the cancer ever did.  My problen is genetic birth defect of the aortic valve and all the veins and arteries on the left side of my body being too small.  They thought I was having afib too but it seems to be an "electronic" missfire of nerves in my heart.  They increased my beta blocker and I've gotten it down from 140 to 77.  Never even knew I had a malformed valve til I got cancer! I really do think the rapid beat can tire you out...it does me and I do sleep about 9 hours a night just to function!

     

    @ Hybride, I talked to my PCP about getting a CA125 done if M.D. Anderson wont do another one before next years check up.  He said to let everything settle down a bit and he'd run one, just for my peace of mind.  I see him in August so will maybe get it then.  I go back to Houston June 19 for cardiac ultra sound

     

    Thanks again for replying and caring!  Debra

    CA-125 from PCP

    I am glad you reached out to your PCP.  This will give you the peace of mind.  You have gone through so much and deserve to know that things are fine

     

  • pinky104
    pinky104 Member Posts: 574 Member
    #7
    Kathy G. said:

    Hey DebraJo!
    So RELIEVED to

    Hey DebraJo!

    So RELIEVED to hear from you! Was really getting worried.

    Of course I know nothing about CA levels, etc. due to my cancer being so early stage, but is there a possibility they may rise due to the major stress open heart surgery imposes on your body? I am sure any lab work goes bonkers during that time period. Most diseases affect our red & white blood counts & other levels. I don't know...kinda grasping here and I am sure the more experienced ladies can share their knowledge.

    I am sorry you are having such a difficult recovery from your surgery. However, based on what you said that seems to be understandable....the culmitive toll those surgeries have on your body. I know this is the cancer board, but I have had a far harder time with my heart than I did with the cancer. It is 'only' atrial fillibration, but when they caught it I apparently had it for quite some time. I have it 24-7. the past year they have been trying differnt treatments to get my heart rate under 100...it was going as high as 180 for periods of time. Then, I thought it was the high heart rate that was causing my significant fatigue, but found it was one of the betablockers they put me on.

    So I have an idea of how difficult dealing with heart issues can be...the level of fatigue caught me so off guard...I was literally sleeping 12 hours a day sometimes.

    I wish you a speedy recovery...I know you had so much on your plate and were a major caretaker...so please take care of yourself and keep us updated.

    Kathy

     

    Kathy G. (and Debrajo)

    I think you're right about the CA 125 being affected by the heart surgery.  If you read the booklet in the link that NoTimeForCancer put in another thread recently, it does mention the fact that the test can be altered by several different things going on with the body, including surgery.  Thirty-five is the magic number above which there is cause for concern, but even that doesn't necessarily indicate cancer has returned.  We all worry when the figure goes up, even slightly.  It's normal.  And certainly, heart surgery could do a number on the body to skew the test results.

    I have another condition called hemochromatosis (a genetic form of iron overload).  I had my ferritin (iron) level tested once when I had a cold, and the figure had tripled.  Six months later, I was tested and was normal.  I had worried for nothing.

    I hope your recovery from your heart surgery goes better than it has previously, Debrajo.   

  • HellieC
    HellieC Member Posts: 524 Member
    #8
    debrajo said:

    Thanks Hybrid and Kathy!  

    Thanks Hybrid and Kathy!   You are so right Kathy, this heart has caused me more trouble than the cancer ever did.  My problen is genetic birth defect of the aortic valve and all the veins and arteries on the left side of my body being too small.  They thought I was having afib too but it seems to be an "electronic" missfire of nerves in my heart.  They increased my beta blocker and I've gotten it down from 140 to 77.  Never even knew I had a malformed valve til I got cancer! I really do think the rapid beat can tire you out...it does me and I do sleep about 9 hours a night just to function!

     

    @ Hybride, I talked to my PCP about getting a CA125 done if M.D. Anderson wont do another one before next years check up.  He said to let everything settle down a bit and he'd run one, just for my peace of mind.  I see him in August so will maybe get it then.  I go back to Houston June 19 for cardiac ultra sound

     

    Thanks again for replying and caring!  Debra

    Hang on in there!

    Hang on in there - I understand that CA125 can become raised due to inflammation and other things.  So with all the surgeries and heart issues, that perhaps explains it - but so pleased that you can hopefully get a repeat before your next major gynae checkup. 

    In the meantime, I think you should celebrate how far you've come under such gruelling conditions.  I remember that you were so kind to me when I was looking at the possibility of treatments etc which might have involved travelling to the USA.  You didn't hesitate to offer me support and a place to stay and and I will never forget that.  I'm really hoping that you've left the cancer well behind you and that the heart settles down.

    With all kind wishes
    Helen x 

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #9
    So glad to hear from you.

    So glad to hear from you.  Glad to know that you are hangin in there.  CA rises based on truma or something affecting the immune system.  Mine is normally around 12-13.  The last one I had on March 17 was 16.1.  On March 21 I broke out with a case of shingles.  I sent a message to the Dr and her nurse answered that anything that attached to the immune system would make it rise.  My Dr. is not satisfied so I go in for a CT scan on Friday to check everything out internally since I have no systems of cancer.  We will see then.

     

    Sorry you have gone through so many different surgeries but congratulations on beating the cancer and remaining NED for so long.  You are in my thoughts and prayers. trish

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #10
    Debrajo!  You have your hands

    Debrajo!  You have your hands full.  I hope you heal from your surgery, and while your CA125 rose, there are many things that can cause that and cancer may not be the reason.  Your heart is your 'engine' so get that right first.  Be gentle on yourself.

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