I am so sorry you have to be with us but you are very welcome to our group. You have been through a lot already but your journey continues.
I really have no answers for you but I can tell you of a few cases we have seen that have something's in common with your situation.
The first is also a male who was DXed with CIS of the Ureter and kidney on only one side. He has been all clear for about three years. They instilled BCG in his kidney using a tube inserted though his back into the kidney.
Another is a young woman in her early 40's at this time about ten years ago she was in your exact situation. She chose to go the route of having her remaining kidney removed. It has not been easy of course but once she was able to set up for in home dialysis her life became a lot easier. She works skis and is raising her son. Her decision was based on the fact that she felt the risk was high for reacurrance and progression and she felt that for her it was the right decision.
I guess you need to talk to your doctors about your options and what they feel will give you the safest and best outcome long term. You and I both know how aggressive and presistant CIS can be but it does respond to BCG often times but has been known to progress quickly even if treated.
You are working with some of the best and I am sure they will give you a lot to think about. At times like this I wish we had a crystal ball it would help a lot. Please let us know what they have to say I will be thinking of you. I wish I could be of more help but know we are here to listen if you need us.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Hello, I want to thank you in advance for reading my case history, and for any feed back you can provide.
I am a male, 54 yoa. I am originally from Jamaica.
On April 30, 2015 and again re-confirmed (map biopsy) on June 4, 2015, I was diagnosed at the University of Miami, Miller School Of Medicine, U-Health, in Miami, FL., with Urothelial Carconia In Situ Stage 0, in my right kidney and right ureter.
The pathology report advises as follows:
A. Right Mid Ureteral Bx:
Urothelial Carconima In Situ in mostly denuded urothelial mucosa.
Muscularis propria (detrusor muscle) is present and not involved.
B. Right Distal Ureter Bx
Minute fragment of unremarkable small intestinal mucosa.
Note: Patient's concomitent urinary cytology has been received and the diagnosis of urothelial carcinoma is confirmed.
Exams: Retro Pyelgram W or WO KUB:
Their is hydronephrosis of the right collecting system following myelogram.
Cancer history: April 1996, originally diagnosed with carcinoma in situ of the bladder at Sloane Kettering Cancer Ctr, while then residing in NYC. Between 1996 to March 2008, I under went surveillance cystos and biopsies, and 6 round / cycle of BCG.
In 1995 left kidney removal.
In March 2008, bladder removal and Neobladder was in placed at (UHealth).
Post Neobladder, cancer free for 7 years.
April and June 2015, carcinoma in situ in right ureter and right kidney.
My doctors for whom, I have awesome confidence in, will present my case history to U-Health tumor board at Sylvester Cancer Center, and University Of Miami, Miller School of Medicine, part of U-Health, on Wednesday, 6/24/2105 for recommendations.
My doctor who was trained at Sloane Kettering Cancer Center and New York Med, and a bladder specialists who is working with a kidney specialists, thinks the tumor board will more likely recommends the removal of my only kidney and ureter.
My follow up biopsy that was done on June 4, 2015, was to map the exact location of the Carcinoma in situ in the kidney and ureter.
I am hoping and praying that my present cancer diagnose is treatable in hopes of preserving my only kidney, and I will be able to continued working in my profession, and reached my 20 years service to retirement with full medical benefits.
I am fairly new to BCAN and The American Bladder Cancer Society Network and have learn so much.
Your thoughts or recommendations that I can discuss with doctors on Friday, June 26, 2015 will be a life saving.
Again, thank you for your time, and I look forward to your feed back.