Jul 07, 2011 - 6:04 pm
Hi! I am a 36 year old female and am new to this. It all came on very suddenly. I was diagnosed with what was thought a non cancerous tumor/cyst on my left kidney. We only discovered it during the diagnosis of a very large kidney stone in the same kidney which I had removed. I've never had a kidney stone or any kidney issues before and it does not run in my family. The doctor gave me the option of just surveilling the tumor over time or surgery to remove it. I chose to have it removed just to be safe. We had discussed the chance of a partial nephrectomy once in surgery depending on the size of the tumor and exact location. Long story short, during surgery they went to my husband in the waiting room to ask for permission to remove the entire kidney. The tumor size was much larger than originally thought (8 X 8 X 8 8.5cm) and there were blood supply issues. Still no one thought it was cancer. Given the size and the total nephrectomy my incision(s) are quite large. The surgery was Monday and I just found out yesterday it was Papillary Renal Cell Carcinoma, which shocked us all. However, the doctor believes that he got it all and the margins were clear. I do not know what stage I am, from what I have seen on line I would assume Stage 2 given the size.
My doctor basically told me that I am clear and to come back in a year for more scans and blood work. My concern is that that seems like a long time to go with no monitoring, especially since we do not know how long the tumor/cyst I had removed was there in the first place so we don't know how quickly it grew. It was one month from detection to removal. For others that have been through this, what questions should I be asking? Should I be pushing for checkups closer? How do they know it has not spread to my bones or lungs etc? I was not referred to an oncologist or anyone else for follow up either. This was my Urologist who diagnosed and conducted the surgery. A very good doctor by all accounts. However, I feel like I should be doing more to monitor the situation based on what I have read on line. For those who have been through this is there any advice you can give me or questions that I should ask? I do have a copy of my Pathology report but it is not easy for the laymen to read. I know I have to be my own health advocate, but this caught us so by surprise that I was not mentally prepared nor had I researched anything.
I would appreciate any advice anyone has to offer. I feel a little guilty asking as I realize many people on this network would trade place with this diagnosis in a heartbeat and I do feel lucky in some aspects, just totally unprepared.
Also, I am finding little information about PRCC on line but saw someone mention a list serv in an earlier post? Could someone tell me a little more about that?
Thank you again and best of luck to you all!