Pathology report

Your urologist is correct that a PET scan will not generally show RCC but he is incorrect in thinking that is what a good oncologist will recommend.  Since you are grade 3 I would expect that oncologist to have a CT-scan (not PET) in 4 to 6 months intervals for the next year or so.  If you remain clear after 2 years he would probably then go to one year intervals.

Regardless, you should find an oncologist; preferably one who has experience and expertise with RCC.  Forget about your urologist going forward.

I doubt he will order a PET scan. If you had any suspicious things on bones on your CT scan, he might order a nuclear bone scan just to make sure they are negative for RCC.

He/she will follow you more closely. I'm pretty sure the minimum standard of care is CT scans every 6 months of the abdomen and pelvis (with constrast if your creatinine is below 1.5) and a chest X-ray for the first 2 years then annually to 5 years. You should have your lungs xrayed at a minimum. An oncologist might order CT of lungs, abdomen and pelvis. Lungs are the most likely next location to look along with bones right behind that.

Try and find a medical oncologist with RCC experience, the more the better. Or at least one that is willing to do some homework and read up on some research papers or make a few calls to docs doing research on this. Whoever is following you really should be up-to-date on where to look, what tests to run, and what to look for in terms of likelihood. It would be great to have someone that can also do something about it if something comes up. I find docs that are the ones that have to take care of the problem do a better job following their patients.

These small tumors that are Stage 1 have a good 90% (possibly better) successful cure rate with the surgery. If you do, heaven forbid, fall into that other category you want to catch it early rather than later.

Best wishes to you.

Todd

Darron said:

Great news, great action

Great to hear you have your cure!

it should feel great to be your own advocate. The urologist did a great job, time for the next expert to take over. You may find oncologists that say they dont need to see you. Those are likely not kidney specialistS. It ia important to find a RCC specialist. They should understand it is a tricky disease and be thankful you are looking for someone with a good eye for it.

A CT of chest and abdomin every 4-6 months should be standard of care. Neil's comment about PET scans wasn't  clear to me and took a second read to get his sarcasm. Most RCC metastasis doesn't show on a PET scan. A good RCC doctor will not order a PET scan first. He will order a CT. 

Being stage IV, my doctor also did a bone scan and a brain MRI immediately. That is likely not in store for you. If you have headaches, blurry or change in vision, they may do a brain MRI.

Right now, your focus sgiuld be rest and drinking lots if water (my doc says 3 liters a day). If you haven't found the right RCC doc, still go for a CT of chest and abdomin within 6 months thru your urologist. 

If you are going to get cancer. Stage I RCC is an easy one to get. In a couple months, you will be 100%! 

Darron, thanks for clarifying what I should have expressed more clearly about PET-scans versus CT-scans.

PET scans rely on the Warburg Effect.  This was the observation made by Dr. Otto Warburg (who subsequently won a Nobel Prize for his research) that many kinds of tumors need to consume far more glucose than normal tissues - just to remain alive let alone quickly proliferate.  A PET scan relies on this knowledge.  It employs glucose that has been tagged with a radioactive tracer. It just looks for any tissues that consume too much of this radioactive glucose.

However, most renal tumors are not avid for glucose.  This is because they have the ability to utilize other sources (i.e. certain amino acids) for nutrients.  They are also usually slow growing so they won't necessarily require a lot of glucose to "run" on.  The bottom line is that relying on a PET scan to detect them is not very smart.  It is too likely that something sinister might be missed.  So a CT-scan (or an MRI in certain cases) is the right way to go.