Had my first CT done after surgery in March yesterday and my PCP sent me an email to let me know it's NED! woohoo! 

I will be struggling with getting the right follow up. The oncologist I saw refused to do the 6 month CT and said if I wanted that to return to the Urologist. I called the Urology office who ordered it right away, but the surgeon has said if the first scan was NED he wouldn't order any more in the future. Any recommendations on self-advocacy here? I had a T1b Papillary RCC Type 2 which I know is the more aggressive of the two types. And I also know that recurrence is usually after 2 years. 


HAPPY for the good news currently though! 



  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    First congrats on the NED

    First congrats on the NED results. It will be a year since my surgery next month, and my last scan was in May my next isn’t even scheduled that worried me. But many here say that’s  not too far from the norm for stage one. My doc want to do annual scans. I’m trying to get comfortable with that. We do have to advocate for ourselves. 

  • MelBlessed
    MelBlessed Member Posts: 71 Member

    The best word on here NED!!Im not sure how you get docs to order more frequent scans, mine was 1 year from surgery (I did get it a couple months early due to work and insurance issues). Next one in a year. Best of luck to you.

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    CONGRATS!!!! Awesome news!!!

    CONGRATS!!!! Awesome news!!! Fight for what you want. Don't let anyone say NO. I just had this conversation with my Oncologist on Wednesday. He didn't want to do a repeat brain MRI when there is both a tumor and a lesion, and I definitely want a follow up MRI. I was very polite but firm and I got my wish. So in Nov. when I have my regular CT scan, I will also have the brain MRI around the same time. I have to!! With pRCC Type II, we HAVE to keep up on scans. NO choice!! Of course mine's stage 4, so it's a little more hairy, I guess you could say. But I don't poo-poo any stage of this aggressive monster. Continue your self-advocacy and if that doesn't work, go higher up on the food chain in the organization. Every hospital has a patient advocacy office, and I would think a large clinic would as well. GOOD LUCK!!! Keep fighting and don't give in or give up!

  • jazzgirl
    jazzgirl Member Posts: 226 Member
    Go Glidergal!

    Lovely to hear NED.  Keep asking about those scans.  I had 6 month then yearly after that so far alternating CT and ultrasound (2 years since surgery.)  Take care -

  • stub1969
    stub1969 Member Posts: 959 Member
    Wouldn't order anymore??

    I'm guessing your surgeon is not an RCC specialist.  If he/she takes that stand, then indeed go back to your urologist or find another doctor.  At the very least you should have CT scans annually for a couple years.

    Congratulations on the NED.  Enjoy and celebrate!


  • Canadian Sandy
    Canadian Sandy Member Posts: 739 Member
    Congrats on Ned status! 

    Congrats on Ned status! 

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    Keep pushing for the scans




    Keep pushing for the scans for at least 6 years. Not as good,  but a lot more insurace frirndly are ultrasounds.




  • Tapman63
    Tapman63 Member Posts: 137 Member

    Always good to have a visit from Uncle Ned!

  • Gtngbtr58
    Gtngbtr58 Member Posts: 206 Member
    So glad to

    Hear your good news.   Be your own advocate, keep on top of things but enjoy NED for now-June

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Congrats with NED!

    Congrats with NED!

    My Urologist explained how he does a blood test that measures markers for cancer at EVERY follow up. 

    It lets him know if cancer cells are increasing. He would then do more testing. I only had 1 CT then only chest xray and labs after.

    But I did have a new complaint and of course he did another CT. It was fine. My pain was from something else,

    Talk to your original urologist about this ok. Keep on keeping on!

    Healing hugs, 


  • CRashster
    CRashster Member Posts: 241 Member

    Worked for me.

  • Glidergal365
    Glidergal365 Member Posts: 93
    Thanks everyone :)

    I knew I could count on you for ideas! The Urologist is not an RCC specialist. We only have one urology group and no one really is. As far as the Cancer center, I see him later this month for follow up and will tell him I followed the protocol. He may or may not suggest at least an US in March at the one year mark. That would make me feel better personally. And then maybe another CT in a year (next Oct). If all those are clear then I'm more than happy to go to once a year unless something comes up. The CT tech remarked that my labwork was so good she didn't know I only had one kidney! That was nice to hear :) Until then I can breathe easier and finish up my last year of grad school! Thanks ya'll, you're amazing. 

  • LMCRJB13
    LMCRJB13 Member Posts: 84

    Happy that you're NED - a great feeling isn't it? 

    I echo what others are saying...try and get your providers to toss in CT or MRI at least once yearly.  My urologic oncologist has me volleying every six months between x-ray and ultrasound and CT or MRI.  That yearly combo should catch something if it comes up.

    Best to you - now celebrate!  


  • foroughsh
    foroughsh Member Posts: 779 Member
    Congrats, it's wonderful news

    Congrats, it's wonderful news

    Mine was clear cell so I don't know about the protocol for papillary tumors, maybe it would be good to have second opinion.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    Congratulations!! All I have

    Congratulations!! All I have been told is that once we have had kidney cancer we need to be watched for at least 10 years (even for the rest of our lives I heard). I would fight for yearly scans for sure.

  • lobbyist0724
    lobbyist0724 Member Posts: 498 Member
    Congrats on Uncle Ned's visit

    Congrats on Uncle Ned's visit. Will definately be more rigorious on the follow up. CRashster's advice is just brilliant.

  • daisybud
    daisybud Member Posts: 534 Member
    Great news!

    Happy for you!

  • ImNotDeadYet
    ImNotDeadYet Member Posts: 244
    So wonderful to see such great news!

    Congrats on your first NED! I hope there are many more to come.

  • Cybball
    Cybball Member Posts: 111
    Congrats!!   So happy for you

    Congrats!!   So happy for you on the NED.   Enjoy that one.

  • Mighty Frog
    Mighty Frog Member Posts: 152 Member

    Congratulaion! I'm doing every 6 months on MRI. My urologist wanted CT scan, but due to the radioactive concern from the CT,  i decided switch it to MRI scan. My Urologist, he seem not very happy with my deicison...... Err.......