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Glidergal365's picture
Posts: 93
Joined: Feb 2018

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's picture
Posts: 209
Joined: Aug 2017

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's picture
Posts: 71
Joined: Aug 2017

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's picture
Posts: 210
Joined: Mar 2018

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's picture
Posts: 203
Joined: Nov 2017

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's picture
Posts: 920
Joined: Jul 2016

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's picture
Canadian Sandy
Posts: 721
Joined: Jul 2016

Congrats on Ned status! 

icemantoo's picture
Posts: 3354
Joined: Jan 2010




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




Tapman63's picture
Posts: 137
Joined: Dec 2017

Always good to have a visit from Uncle Ned!

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 206
Joined: Oct 2017

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

foroughsh's picture
Posts: 779
Joined: Oct 2014

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.

Jan4you's picture
Posts: 1327
Joined: Oct 2013

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's picture
Posts: 241
Joined: Mar 2017

Worked for me.

Glidergal365's picture
Posts: 93
Joined: Feb 2018

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's picture
Posts: 84
Joined: Oct 2017

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!  


AnnissaP's picture
Posts: 632
Joined: Sep 2017

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's picture
Posts: 471
Joined: Sep 2016

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

daisybud's picture
Posts: 513
Joined: Jan 2016

Happy for you!

ImNotDeadYet's picture
Posts: 244
Joined: Apr 2017

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

Posts: 111
Joined: Nov 2017

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

Mighty Frog's picture
Mighty Frog
Posts: 152
Joined: Jul 2017

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.......

cboone75's picture
Posts: 43
Joined: Feb 2012

I had stage 2 with a 21 cm tumor and they followed me 3 months after surgery, then 3 months after that, then 6 months after that.  Once that was done, I was checked yearly then at 6 years they found my recurrance with mets to adrenal gland and lungs.  I would push for follow ups!

Glidergal365's picture
Posts: 93
Joined: Feb 2018

Cancer is dumb. I'll be sending you good thoughts! And I'll be the pain in the butt that gets follow up! 


Posts: 21
Joined: Jul 2018


Canadian Sandy's picture
Canadian Sandy
Posts: 721
Joined: Jul 2016

I just had my six month scan and urologist is scheduling me for another one in 6 months. 

JerzyGrrl's picture
Posts: 761
Joined: Jun 2016

Congrats on the good news and visit with Uncle Ned. Happy dancing with and for you -- !

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