NCCN Guidelines for Follow Ups after a Partial/Radical Nephrectomy for Stage 1-3

We've had a number of posts/questions about what is appropriate followup after a partial/radical nephrectomy for Stage 1-3 RCC.

You may access the National Comprehensive Cancer Guidelines yourself as a patient/survivor. If you go to the website, it will appear as if the site is for physicians only. However, if you go through the registration process, you can register as a patient/survivor and access the guidelines yourself. The guidelines come as a PDF file.

To register, use the following link:

http://www.nccn.org/professionals/physician_gls/pdf/kidney.pdf

and click on the "register an account" link. Answer all the questions. Where it asks for the type of professional you are, there's an option for "Patient or survivor". Select that. For some reason our type of cancer isn't on the "patient/survivor option" for interests, but there's an "Other" and you can put it in. After you finisht, it will email you a link. (check your spam folder if you don't see it in a few minutes.) Click the link in the email when it comes, and you'll be logged in and you'll get the document and can go through it. You should be able to save the document to your computer if you want to by clicking the floppy disk icon on the screen (or you can just read it there).

Search in the document for the NCCN Guidelines (the current ones for 2015 are under KID-B). The guidelines specify what tests and imaging should be done by stage under this KID-B tab (there's 2-3 pages there). You can double check yourself if you're getting the correct followup tests.

If you have trouble getting your hands on the file, please message me. I can email you this most recent pdf. You'll need Adobe Reader to read it. It's about 772 Kb, so not very large.

Hope someone finds this information useful. I'd like to put to rest the issue of what's appropriate followup. Of course, you should take this information to your doctor for advice. He/she can explain what they are doing and why and are the best ones to help you with this information. If you think the information is being ignored, you might want to get a second opinion.

I know for me, my doctor pulls this up on the computer in the exam room and shows it to me when we discuss what's being done and why. It really makes me feel good that he's following guidelines (although I think pulling it up is for me and not for him. I'm pretty sure he has it memorized, since that's his specialty).

Todd