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Follow up testing intervals - how long is ok?

adman's picture
adman
Posts: 260
Joined: Jul 2012

 

I'm approaching my 1 year anniversary for my surgery [ 07/17/12 ] and have had two (2) follow up CT Scand with & w/o contrast [ November was my first, and my 2nd was March - so it's been slightly over the 3/ year mark, but close. My routine has included Xrays, bloodwork, ultrasounds and to-date have been scheduled for every 4 months or so.

My tumor was 5.0cm Stage 1/ Grade 1.

My current follow up is with a generalist ONC DR that was trained at a leading FL cancer center and has a few patients with Kidney cancer, as well as, a Urologist. I know I probably should be seen by a RCC Specialist but, believe it or not, if they didn't do the surgery then getting in to see them is very tough. I'm talking Urological ONC's. What they say is - your current 'genralist' is ok and if a problem arises we'll see you.

I spoke to a few DR's about this and have received different answers on what follow up I need and how often. Anywhere from about 3x / year [ current schedule ]  - to annual x rays then CT every 2 years which I wasn't comfortable with and why I didn't let my surgeon [ general urologist ] continue with my follow up treatment and why I sought out the ONC Generalist I'm currently seeing.

Is 2x/ year enough for what I'm having done and my case specifics? Then once a year after the 2 year mark. I'm sure there is a protocol for my specific case type.

Thoughts?

 

 

 

 

todd121
Posts: 571
Joined: Dec 2012

I remember hearing that the standard of care in your case is abdominal/pelvis CT (with contrast if possible) and chest X-ray every 4-6 months for first 2 years then yearly to 5 years.

I thought most RCC specialists are medical oncologists, not urological oncologists. I had thought most urologic oncologists are urologists first (a surgical specialty) and don't treat systemic disease. You're definitely better off with the medical oncologist with some RCC patients than with a general urologist.

Since you're in remission now and out of the window for any adjuvant therapy studies, it might be hard to get in to see an RCC specialist. You don't really need it at this point. Your prognosis is quite good. Did you have a radical nephrectomy?

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Where have you been, all this while, Todd? 

I think your observations to MG are sensible -  not surprisingly, since I reckon you have fairly similar mind-sets.  He will undoubtedly feel more settled erring a bit on the side of caution, although there's no disputing that his prognosis is better than that of anyone else here that I can think of and he's gilding the lily compared with those of us who're trying desperately to delay the inevitable.

adman's picture
adman
Posts: 260
Joined: Jul 2012

Todd,

Yes, I had a radical Neph. All Dr's I spoke to had somewhat different strategies on how & whay I needed. Bottom line, I wasn't prepared to live w potential drainage issues w no guarantee that a radical wouldn't ultimately have to be done anyway. 

Yes, CT of the Abd/ Pelvis with/ without contrast, chest X-ray, every 4 months, then I guess every 6-12 months after the first 2 years.

*** Texas Wedge, looking forward to getting your perspective on The Open next week. Still looking forward to getting a few rounds in w you over there at some point. And you are correct kind sir, for me 'peace of mind' is definetly a factor in my personal treatment. Whatever it takes, right!;) ***

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