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looking for cases similiar to my dads ureter cancer

labbadiafamily
Posts: 1
Joined: Sep 2013

Hello... My dad was diagnosed with a very aggressive bladder cancer last year. He had his bladder, prostate, urethra, amd some lymph nodes removed. The lymph nodes were negative. Now he has a ilieal conduit and has been doing fine. Just this past month he had a blockage in his ureter and had to put a stent in one of ureters and cancer was found. We have an appointment on wednesday to see what the surgeon has in store for him. but what are the options? has anyone been through this before? He has diabetes and I just dont see how he could have a kidney removed???

ChristinaG11's picture
ChristinaG11
Posts: 6
Joined: Nov 2013

Hi there,

I had/have urothelial cancer.  It used to be called transitional cell carcinoma.  Path is stage 3 (aggressive, high stage) with metastasis.  I am 60 years old.

Yes, the surgery is imperative in order to survive this type of cancer.  I had robotic surgery at a major university in southern California. My kidney, ureter and bladder cuff were removed.  It is called a nephroureterectomy with bladder cuff removal.  The recovery was extremely easy because robotic surgery is nerve and muscle sparing and there are no large incisions from which to heal. The doctor was fantastic, got all the cancer including a metastasis to a lymph node with clear margins. Astoundingly, I had no metastasis to the bladder.  I have a rare case of the cancer starting in the ureter instead of the bladder and travelling up.   I cannot have any chemo because my remaining kidney can't take the drugs.  I have been offered a clinical trial.

The followups are cystoscopy every three months with scan.  I am no longer tired nor am I in pain.  Off all drugs two weeks post-op.  

It is important to go where doctors have experience with this type of cancer.  It is a rare cancer. And go for the robotics.  Well worth it.

Best,

C

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