IMPORTANT INFO: Similar Mayo clinic story that led me back to Dr Erik P Castle
Georjean Parrish http://www.mayoclinic.org/patientstories/story-327.html
When I called this number in Florida I spoke with a person, and was inquiring about this program to see if it was available for TCC too. Well to my surprise the lady informed me that they don’t know what the patient is told because everything shows as RENAL MASS and then went on to explain that this was a Mayo internal kidney registry for all kidney removals with a diagnosis of Renal Mass – well of course that got me curious why I wasn’t offered this option in Arizona and I was told Dr Erik Castle was the Arizona contact person and in-charge/owner of the Kidney registry house at Castle Labs.
So then when I was reviewing my medical records I noticed that all my records only showed “RENAL MASS” even the surgery diagnosis. Again, more question went through my mind, how was I told I had a very advanced stage Kidney Cancer and that is why they were removing my kidney, but my insurance and none of my medical records ever mentioned “KIDNEY CANCER”. Dr Castle himself only had a note “PRESUMED TCC of the Kidney”.
Why if people are told they have RCC or TCC of the kidney and they inform the patient this is a cancer but all the medical records show only renal mass, and all my pre-surgery test (urine, biopsy pre and intra surgery, cystoscopy) all confirmed NO CANCER.