After a "High Risk of Recurrence" diagnosis in 2014 for a rare, terminal and untreatable kidney cancer, I was faced with many of the same challenges encountered by so many others with rare cancers. To learn more, I started attending Kidney Cancer conferences, spoke with specialists in the field, and began working with researchers and patient advocates to help expand the scope of their work and
After several months of development, and input from many sources (Patient Advocate Robin Martinez and Drs. James Hsieh, Sandy Srinivas, James Leppert), we have now released a clinical trial search tool for rare kidney cancer. Check it out and let us know what you think,
The Kidney Cancer Association held a "Survivors' Conference" on Saturday, April 16, 2016 at MD Anderson in Houston.
The KCA also kindly recorded a video (here).
I have reproduced particular slides of interest from Nizar Tannir's nccRCC presentation below:
So what "process" does a doctor follow to determine the appropriate treatment for kidney cancer? I asked Memorial Sloan Kettering's Dr. James Hsieh about this and he sent the attached graphic. For those without 20/40 vision, I describe the graphic here.
Dr. Hsieh specializes in treating kidney cancers. His laboratory primarily focuses its efforts on translational kidney cancer research.
This site is meant for patients who receive a rare Kidney Cancer diagnosis and physicians who give them.
This site's information is vetted by practicing physician scientists who work in the field of rare kidney cancers.