10 years cancer free! and pushing for continued observation in Pittsburgh

I haven't been here in quite some time - a couple of years. It is great to see old faces and I offer good will for those of you who are new.

I was "accidentally" diagnosed with stage 1 RCC at 42 years old - it showed up on a CT for another issue. I had a hand-assisted radical nephrectomy and adrenalectomy on July 6, 2011. Although the tumor was just 1 mm from the renal vien, it was contained within the kidney. 2.3 cm, Fuhrman grade 3. NED!! Good news!

At my urologist's suggestion, I have always seen an oncologist for my follow-up care. My first oncologist said I would be considered "cured" at 15 years. We've moved a few times since then and my different oncologists have had different opinions. My most recent oncologist kept saying "you don't need to come anymore" and my response was "I HAD cancer and didn't know it. I will never be comfortable without some kind of observation. I never want to be in that position again." She ordered genetic counseling to help my peace of mind. It didn't offer any answers of why I got RCC, but I was cleared of all known genetic mutations. More good news!

I know long term recurrence of stage 1 RCC tapers off to a tiny, tiny little tail. But I also believe that as more people are diagnosed incidentally, at younger ages, we are going to learn more about this long tail.

I'm now looking to establish care in Pittsburgh. My primary care doctor recommended a urologist-gynecolist. She'll see me for other matters, but not the RCC. She referred me to a urologist, but he is not in my hospital network. How hard do I push? How are my fellow long time survivors being managed?

Thanks for listening - I appreciate any advice!