Xp11.2/TFE3 Gene Fusion Renal Cell Carcinoma Help!

momneedsinfo

Hello all,
I posted before under 17 year old daughter. We finally got the pathology back on her tumor (removed with her right kidney on Oct. 15) and this is what they have diagnosed her with. She is preliminarily staged at T2 NxMx. So, I think until we get to an oncologist, we won't know further if it has spread or not. Has anyone here had experience with this type of kidney cancer? Apparently it has something to do with the translocation of chromosomes/genes. There is not much information in the internet. We are in Orange County, Southern Calif. We are considering taking her to UCLA, Ceder Sinai or City of Hope Medical Center. Does anyone have any input on these places or good oncologists in So. Cal?

She is recovering pretty well from surgery. It's been 2 weeks and she is off all pain meds except Tylenol. She is considering going back to school next week, but we don't know how she can sit at a desk. Her incision is becoming more painful. It looks good, no infection, but I wonder about nerve endings? We are having difficulty, because of her age, it is emotional and she feels like no one understands and she misses her friends and activities.

Thank you all in advance for any help. There is some wonderful advice on here and I'm glad to be able to learn from you all.
Kristi

patchriston

I had a 20 cm tumor on my left kidney, I had mine removed October 29, 2009. I found out about this 2 weeks before I turned 30. I am doing great other than tylenol also. If it was encapictated in one area it did not spread she is fine. I believe your daughter is going to be just fine. I just recently had my surgery two weeks ago and I got a 12 inch cut across my stomach. They did my surgery the old fashion way with no robotic surgery. If I could be released right now to go back to work I would. Your daughter just want to get back to living her normal life. This is part of her healing process, it will make her feel good and not worry about what has happened to her.