NED at 5 1/2 years...

adman
adman Member Posts: 336
edited January 2018 in Kidney Cancer #1

just had my 5 year scans and bloodwork, a few months late. So grateful to report that my oncologist has released me and said I’m cured At 5.5 years.  

I’m a little uneasy about that given the sneakiness of this disease. 

Still, I AM very grateful for my NED Report & the support this forum has provided to me the past 6 years. Thank you to everyone. 

God Bless.

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited December 2017 #2
    After 5 years

    adman,

     

    Talk to your doctor about lesser scans. After 5 years I have had ultrasounds each year with a CT thrown in at year 10. That should connect any snealy thing in the bud.  At 15 1/2 years now.

     

     

    Icemantoo

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    #3
    Congratulations! May you be

    Congratulations! May you be Ned for many more years.

     

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #4
    Congratulations! I agree with

    Congratulations! I agree with Iceman....get some ultrasounds as follow up.

    Hugs

    Jojo

  • APny
    APny Member Posts: 1,995 Member
    edited December 2017 #5
    So happy for you! But I agree

    So happy for you! But I agree with everyone; I would continue getting checked up maybe once a year with an US. Or even every other year.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #6
    Glad you made it! 

    Glad you made it! 

    My surgeon told me he checks for elevated signs of cancer in a blood test.

    Maybe you can ask to have that done instead of a scan?

    Celebrate your life!

    To you and yours!

    Jan

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #7
    Jan4you said:

    Glad you made it! 

    Glad you made it! 

    My surgeon told me he checks for elevated signs of cancer in a blood test.

    Maybe you can ask to have that done instead of a scan?

    Celebrate your life!

    To you and yours!

    Jan

    Hi Jan, do you knkw what

    Hi Jan, do you knkw what specific sign he is testing? Would recommend it to my doc as he onky look at the standard value such as GFR and creatine. Thanks.

    Carmen

  • foroughsh
    foroughsh Member Posts: 779 Member
    #8
    Congratulations, thanks for

    Congratulations, thanks for sharing

    I'm so happy for you

     

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    edited January 2018 #9
    Awesome. Congratulations!!!

    Awesome. Congratulations!!!

  • Cybball
    Cybball Member Posts: 111
    #10
    Congrats and enjoy that NED!

    Congrats and enjoy that NED!

  • daisybud
    daisybud Member Posts: 541 Member
    #11
    Congrats !

     Very happy for you

  • stub1969
    stub1969 Member Posts: 966 Member
    #12
    Thanks

    For the update and sharing your good news. 

    Stub

  • Kat23502
    Kat23502 Member Posts: 179 Member
    edited January 2018 #13
    Great news!

    Great news!

  • adman
    adman Member Posts: 336
    #14
    Darron said:

    Question on scans

    Iceman

    I am a trial patient, so I basically have to continue scans per the trial schedule, even though I am nearly 4 years NED. Do you do ultrasounds because insurance won't pay for a scan? Thinking out loud, I almost cant imagine not having a scan every year.

    Scans each year....

    Receiving scans every year at my age (54) would mean I would be exposed to radiation for another 20-25 years, on top of what I’ve had the past (5) years; 3-4 the first few years. I think a lot depends on the stage/ grade of your tumor at the onset. 

    According to my Dr. that isn’t a great idea. I do beleive at this stage, a scan every (3) years does make sense. 

    The ‘ultrasound’ is a good isea, but according to my Dr., RCC will show up somewhere else, so how do you do an effective ultrasound to cover every area of the chest, abdomen & pelvis ??

  • foxhd
    foxhd Member Posts: 3,181 Member
    #15
    Nice Adman!

    Keep doing what you're doing. I think randomly looking for detectable tumors with US isn't worth the effort. You would probably be aware of something wrong, before an US would find a met. Stick to scans with a progressive taper that you are comfortable with.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited January 2018 #16
    lobbyist0724 said:

    Hi Jan, do you knkw what

    Hi Jan, do you knkw what specific sign he is testing? Would recommend it to my doc as he onky look at the standard value such as GFR and creatine. Thanks.

    Carmen

    Hi Carmen~

    Hi Carmen~

    I believe the test is caused Lactate Dehydrogenase (LDH)

    along with Metabolic Panel. Look up the test and add the word cancer. 

    If the number is high, I guess, it means you could have more cancer cells is my understanding. 

    Seems our immune system is always fighting off cancer cells, even for those who never had cancer. 

    Talk to your doctor about it. I never knew he was using this test till I asked him.

    Jan

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #17
    Jan4you said:

    Hi Carmen~

    Hi Carmen~

    I believe the test is caused Lactate Dehydrogenase (LDH)

    along with Metabolic Panel. Look up the test and add the word cancer. 

    If the number is high, I guess, it means you could have more cancer cells is my understanding. 

    Seems our immune system is always fighting off cancer cells, even for those who never had cancer. 

    Talk to your doctor about it. I never knew he was using this test till I asked him.

    Jan

    Thank you Jan! Happy New Year

    Thank you Jan! Happy New Year! Carmen

  • Darron
    Darron Member Posts: 310 Member
    #18
    icemantoo said:

    After 5 years

    adman,

     

    Talk to your doctor about lesser scans. After 5 years I have had ultrasounds each year with a CT thrown in at year 10. That should connect any snealy thing in the bud.  At 15 1/2 years now.

     

     

    Icemantoo

    Question on scans

    Iceman

    I am a trial patient, so I basically have to continue scans per the trial schedule, even though I am nearly 4 years NED. Do you do ultrasounds because insurance won't pay for a scan? Thinking out loud, I almost cant imagine not having a scan every year.

  • marosa
    marosa Member Posts: 334 Member
    #19
    Congrats Adman!

    That is great news we all love hearing!  

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