my dad, 64, was just diagnosed with TCC of the ureter. They found a tumor just an inch above the bladder in one of the ureters. They ablated it with a laser during the cystoscopy last week and he's having that ureter and kidney removed as a preventive measure tomorrow. At this point, every thing else (kidneys, bladder) looks normal .. hopefully that'll be confirmed during the surgery tomorrow.
Is this the right forum where I might find relevant information and support? I came here because:
1. TCC in the ureter is much less common than TCC in the bladder.. so the former seems to have no forum. But it involves the same cell type..
2. The biggest worry, after the surgery, appears to be recurrence in the bladder. He'll get mitomycin in the bladder right after the surgery. Hopefully he'll get a BCG treatment as well once the surgical woulds have healed. So overall, it feels like we are essentially dealing with bladder cancer issues..
A. Does anyone here any experience with such upper tract TCC? Am I right in conflating it with bladder cancer?
B. My dad is being treated in a third-world country just now, albeit one with world-class doctors and medical expertise. We might have enough funds (say $20 - 30k) to have him get second opinions and maybe some treatments in the US, esp. close to family (Ohio, Chicago, San Francisco..). If anyone knows about paying out of pocket at cancer centers like Mayo, Cleveland, Sloan etc, I'd appreciate any advice on which centers are most affordable.
Our primary goal would be to make sure we know about the latest curative and preventive measures (e.g., BCG vs mitomycin vs other personalized chemo?, removing entire bladder as a preventive measure?, is TCC tumor sequencing worth it?). I suspect my dad can have most treatments done in his home country at affordable rates.
C. I'd love to know if tumor sequencing is worth it. I'm not sure we'll have the option give the size of the tumor and the laser but I am going to ask the pathologist here to prepare a paraffin block for FoundationOne.. it will cost us $5k since insurance will not pay for it.
Wow. Lots of info! Welcome, glad you found us as most will say but, sorry you have to be here!
Most of us are bladder cancer survivors with some having other involvement-usually ureters and kidneys. Hang with the forum as all I have had is bladder with no other involvement but, I will bet someone with experience will chime in with experience.
Either way, these types of cancer are DEFINTELY worth a second opinion and The Cleveland Clinic and Northwestern U in Chicago get lots of high marks from posters on this board. You want a specialized kidney/bladder hospital that does just that. So many practices add prostatic and that dilutes experience. I don't remember seeing much about San Francisco.
Keep checking, someone will have more insight.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Yes, there have been others with spread to the ureters/kidney, but not so much originating there. However, the lining of the ureters and the lining of the bladder are the same cells type, so it shouldn't be a surprise.
I would also recommend, along with Alan, that you seek a second opinion at a major cancer center that specializes in bladder/kidney issues. Once you have discovered that you have a condition that is outside the average, you really need to find the best expertise there is. There is a bladder cancer treatment finder on our home page that might give you places to start. You could contact them about the financial issues.
I would consider only non-profit/academic centers which are known for their cutting edge expertise.
Wishing you and your family the very best
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society