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surveillance protocol for stage 2, grade 3

ZVM's picture
ZVM
Posts: 21
Joined: Mar 2017

Hello to all. I am wondering what the follow up protocol is for pT2aN0M0, grade 3, 10% necrosis 10% sarcomotoid. My surgical oncologist wants to do the usual CT’s once a year with bloodwork every 6 mo. While I’m happy not to have scans every 6 mo, I thought it was recommended for the first few years. 

 

icemantoo's picture
icemantoo
Posts: 3181
Joined: Jan 2010

ZVM.

Protocols chamge from Doctor to Doctor and involve more than just what is on the path report. Seek a second opinion if you are uncomfortable.

 

 

icemantoo

Allochka's picture
Allochka
Posts: 847
Joined: Nov 2014

Yes, as Iceman said, protocols do vary. You can check what are recomended follow ups by different urological or cancer associations.

But personally, I'd expect a more active surveillance, taking into account the grade, necrosis and sarcomatoid features.

If not a CT scan - than perhaps a harmless ultrasound every 6 months?

stub1969's picture
stub1969
Posts: 766
Joined: Jul 2016

I'm with Allochka.  I'd be a bit uneasy with that level of surveillance.  I had positive margins on a microscopic part of my extracted tumor and my doc went with 6 month scans for a couple years.  In less than two weeks I'll get what I would consider my 2 year scans.  Depending on the outcome of that one we'll look at extending those out to annual scans.  

Stub

CK75
Posts: 15
Joined: Sep 2016

That makes me worry too. 1.5 yrs after partial neph, 6 months CT scan was told to go for annual scan going forward. Stage 1 3.4cm clear cell grade 2 with 1mm positive margin, my urologist said is ok since during surgery it might have burn off. Surgical area the contrast getting smaller but I am still worried.

ZVM's picture
ZVM
Posts: 21
Joined: Mar 2017

CK75, it sounds like you are doing well, but certainty goes out the window, doesn’t it. So something that can be seen in your surgical area is less visible? 

CK75
Posts: 15
Joined: Sep 2016

It‘s the surgical wound that shows up. Initially my doc wasn’t sure till second CT 6 months later. So the contrast area got smaller as compared to previous scan so from 6 months scan now it will be annual scan. Still worried since this is a sneaky cancer.

ZVM's picture
ZVM
Posts: 21
Joined: Mar 2017

Thank you for the input & suggestions! I like the mri idea. When you’re not going to a major medical center, after reading people’s stories here & elsewhere, you second guess even a dr that you like very much. I had full scans 6 mo post nephrectomy. All was well except 3 small nodules we are watching in my thyroid. One qualifies as somewhat suspicious but is too small to biopsy yet. At the 1 year mark my dr ordered just bloodwork. I requested a CT & got it. Things still looked good, “ no convincing evidence of metatstatic disease.”  My dr was thinking I was stage 1, because that’s what the original path report said. I said no, I’m 2a because the tumor was 7.4 cm at it’s largest. He agreed w me & was nice enough to pull up recommendations by stage right there in front of me. He still thinks 1 CT a year is good w bloodwork at the 6 mo point. I’m wondering & of course value the opinions of fellow RCC pts the most. I’m chromophobe by the way. 

msjax
Posts: 20
Joined: Dec 2017

I also received the same follow up protocol for my recent diagnosis of chRCC T3aNxMx -- blood work at 6 months and CT scan a year out from my surgery.  The onc/uro/surgeon thinks I should skip a year between after that -- this frightens me given my upstage to T3, so I plan to talk with him more at my 6 month follow up.  Does anyone know if there is a standard on surveillance and if there is, point me in the right direction so I have something for discussion at my next appointment ~ thanks! 

lobbyist0724's picture
lobbyist0724
Posts: 377
Joined: Sep 2016

Hi all, there are different guideline defined in different part of the world such as AUA, American Urological Association; CUA, Canadian Urological Association; EAU, European Association of Urology; and NCCN, National Comprehensive Cancer Network. This document compare the differences of all 4 of them and should give you a better understanding, For T2 and up, i believe once a year is not enough according to the guidelines. 

Hope this help!

https://onlinelibrary.wiley.com/doi/full/10.1111/bju.13384

ZVM's picture
ZVM
Posts: 21
Joined: Mar 2017

Lobbyist0724...thanks for the great info. As the article recommends, would be nice if there were unified accepted standards! Was out of town so just now followed your link. It confirms my feeling about frequency of scans. Guess I will be getting a 2nd opinion, or having another discussion w my dr.  

msjax
Posts: 20
Joined: Dec 2017

Great information ~ thank you!

foroughsh's picture
foroughsh
Posts: 771
Joined: Oct 2014

I am stage two grade two, my tumor was 10 cm, little necrosis and not sarcomatoid, I had a baseline C.T scan three months post surgery , I also had severe headache and shoulder pain and aches which led to brain MRI and bone scan with boring results. After the first C.T, I had C.T scans every six months and abdomen, pelvic U.S & blood work in between two C.T  for almost three years, then my urologist changed my schedule to anual C.T scan and having one abdomen, pelvic U.S in between.

 

marosa's picture
marosa
Posts: 327
Joined: Feb 2015

protocols and how they may vary.   I have been on every 6 months check-ups and CTscans since my partial neph on Sept 2014.  Last was early November.  My doc wants to move to every year now.  Tb 1 grade 2-3

Think I read in the US if there is some grade 3 in the tumor it goes to grade 3  automatically? Not sure, but in France that's what my biology report says;  grade 2-3

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

The trouble is that all of these are too general because they are based only on stage.  There are other factors that impact the risk of recurrence:  histology, grade, necrosis, sarcomatoid.  But, it wouldn't be practical for them to publish protocols based on all of these which is why the knowledge and experience of the physician is so important and why I am a serious believer in seeing an Onocoligist with experience with RCC at least for Stage 2 and up.

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