Long term results

tgpath1
tgpath1 Member Posts: 97 Member

I am trying really hard not to be anxious about my future...some days I do better than others.  I just had my six month scans (after radical nephrectomy in March) and it appears to still be clear.   I say appears because my apppointment is not until 9/22, I am just reading the results in my chart. I am not looking at Google because it scares me.  But sometimes when I read about others journeys, it makes me worry (recurrence or secondary cancers showing up after the nephrectomy).   My cancer was stage 3 with no evidence in the lymph nodes.  But I often worry that because it was stage 3, I am at higher risk of it showing up.  My doctor told me that I will live a long life but nothing is guaranteed.  Have any of you long term survivors had stage 3??  I guess I just want validation that it is possible to be that advanced and have it NOT show up later.  I don't let this define me or consume me, but worry does creep in every now and then and I wonder how many people have long term survival.

Comments

  • Mmoses25
    Mmoses25 Member Posts: 281 Member
    edited September 2021 #2
    All we can do

    All we can do is take it one day at a time I worry everyday about my future but it gets Easier with time and you got to have faith your not alone in this journey 

  • Mmoses25
    Mmoses25 Member Posts: 281 Member
    edited September 2021 #3
    By the way

    Congraulation on your scans

  • Allochka
    Allochka Member Posts: 1,022 Member
    edited September 2021 #4
    Hello,

    Hello,

     

    yes, plenty of people here, survivors of Stage 3, NED after years! Here are also Stage 4 survivors. some of the manage it as a chronic disease, some are cancer free! Not all are regularly posting, but I 'm on this board for 7 years, and it is absolutely possible to live long healthy life after Stage 3.

     

    What was your RCC subtype and Fuhrman grade, if any?

     

    Anxiety is terrible, but it does get better with time :-)  Congratulations on clean scans!

     

     

  • tgpath1
    tgpath1 Member Posts: 97 Member
    Allochka said:

    Hello,

    Hello,

     

    yes, plenty of people here, survivors of Stage 3, NED after years! Here are also Stage 4 survivors. some of the manage it as a chronic disease, some are cancer free! Not all are regularly posting, but I 'm on this board for 7 years, and it is absolutely possible to live long healthy life after Stage 3.

     

    What was your RCC subtype and Fuhrman grade, if any?

     

    Anxiety is terrible, but it does get better with time :-)  Congratulations on clean scans!

     

     

    Thank you!  Honestly, my doc

    Thank you!  Honestly, my doc never told me subtype or Fuhrman grade and I don't see it in my charts anywhere.  I see a lot of people that have specifics but my doc said it was clear cell, which is best case and told me stage 3 (because they thought it was 1 or 2 going in and were surprised that it was stage 3).  For the most part, I don't let my anxiety get to me but I do have my days.  I get particularly nervous when I see people who have mets come up a few years out or who have a secondary cancer show up.  It makes sense though that some of the long term survivors are not posting as much...I've only been here six months.  Thank you so much for your feedback...it definitely helps!!

  • Biner
    Biner Member Posts: 127 Member
    I myself  at the third stage,

    I myself  at the third stage, and just like you see that someone saw a relapse after a few years and it scares me, but I also see people who live a very long time without a relapse, one friend of mine has been living without a relapse for 17 years after stage 3 , I believe that I can do so. You also wish you never see him again.

  • tgpath1
    tgpath1 Member Posts: 97 Member
    edited September 2021 #7
    Biner said:

    I myself  at the third stage,

    I myself  at the third stage, and just like you see that someone saw a relapse after a few years and it scares me, but I also see people who live a very long time without a relapse, one friend of mine has been living without a relapse for 17 years after stage 3 , I believe that I can do so. You also wish you never see him again.

    17 years is great!!!  That's

    17 years is great!!!  That's the stuff I LOVE hearing about!! Thank you!

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    I also have a sub cm cyst on my other kidney

    Its been 19 years and they do    an US every  12 to 18 months. Doc is looking at 2 months from now. I also kept him busy wuth my prostate which was taken out his URO ckassmate who has done over 10,000 of them. Two Rodeos 17 years apart.

     

     

     

     

     

    icemantoo

  • tgpath1
    tgpath1 Member Posts: 97 Member
    icemantoo said:

    I also have a sub cm cyst on my other kidney

    Its been 19 years and they do    an US every  12 to 18 months. Doc is looking at 2 months from now. I also kept him busy wuth my prostate which was taken out his URO ckassmate who has done over 10,000 of them. Two Rodeos 17 years apart.

     

     

     

     

     

    icemantoo

    Thanks Iceman!! Was your

    Thanks Iceman!! Was your stage 3? Not that it matters...I am just curious.  I'm so happy you are well and pray that you continue to do well!

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    edited September 2021 #10
    tgpath1 said:

    Thanks Iceman!! Was your

    Thanks Iceman!! Was your stage 3? Not that it matters...I am just curious.  I'm so happy you are well and pray that you continue to do well!

    I think my kidney was Stage 1, Grade2.

    My  Prostate bipsy was a high number though.

     

     

     

     

     

    icemantoo

  • donna_lee
    donna_lee Member Posts: 1,024 Member
    edited September 2021 #11
    Worrying between scans is futile

    That's something I learned a long time ago.  Iffffff a recurrence  pops up, that's the time to make plans.  With Stage 3 and no evidence of mets, you are in a good postition.  So enjoy the present and deal with the future when it arrives.

    All best wishes and air hugs.

    donna_lee

  • Deanie0916
    Deanie0916 Member Posts: 570 Member
    The worry is normal

    We all do it. The waiting is hardest part. I pray that you can focus on all the good things in your present.?

  • randyradiohill
    randyradiohill Member Posts: 68 Member
    The mental part is hard

    I too had stage 3, which came as a shock because my doctor was positive it would only be a stage 1 tumor.  It's been 4 years and I just had my latest 6 month scan.  It's completely clear and my doctor told me "Your scans look great, whatever you're doing, just keep doing it."

    The mental part has been the hardest part for me...the first couple of years it never left my mind.  Now that it's been 4 years, I can relax and not have it creep up on me anymore.  I still get scanxiety and I think my 5 year scan will probably be a little tough since that is the goal I set for myself.  Like everyone else has mentioned, try to focus on good things and try to stay positive.

  • tgpath1
    tgpath1 Member Posts: 97 Member

    The mental part is hard

    I too had stage 3, which came as a shock because my doctor was positive it would only be a stage 1 tumor.  It's been 4 years and I just had my latest 6 month scan.  It's completely clear and my doctor told me "Your scans look great, whatever you're doing, just keep doing it."

    The mental part has been the hardest part for me...the first couple of years it never left my mind.  Now that it's been 4 years, I can relax and not have it creep up on me anymore.  I still get scanxiety and I think my 5 year scan will probably be a little tough since that is the goal I set for myself.  Like everyone else has mentioned, try to focus on good things and try to stay positive.

    Thank you!  Your story is

    Thank you!  Your story is exactly what I was looking for.  For the most part, I am positive and don't dwell on it.  I can't control it so I don't let it control me.  But for a while, it seemed that I was reading a lot of people who were having mets show up after years of being clean.  So stories like yours are what I was looking for to help offset the others!!  Prayers for many more years of clean scans!!

  • Galrim
    Galrim Member Posts: 307
    edited September 2021 #15
    Stage 2 - 11 years NED

    I understand your concerns. However, stage 3 can be a lot of things, and in some cases youre not worse off than a stage 1 or 2.
    What exactly made you stage 3?
    Histology is often more important than the staging when it comes to the prognosis...

  • tgpath1
    tgpath1 Member Posts: 97 Member
    edited September 2021 #16
    Galrim said:

    Stage 2 - 11 years NED

    I understand your concerns. However, stage 3 can be a lot of things, and in some cases youre not worse off than a stage 1 or 2.
    What exactly made you stage 3?
    Histology is often more important than the staging when it comes to the prognosis...

    My understanding is that they

    My understanding is that they thought stage 2 based on size but when they went in, they upgraded to stage 3 because it was bigger than expected and had gone into poles(??). He said my lymph nodes were clear and that the only difference between stage 3 and stage 4 is whether it has metastasized, which mine has not (and hopefully does not).  I'm new to this and not really sure why it was determined stage 3 but my guess is that it has to do with where it extended to within the kidney?