Welcome!! and congratulations on how well you have navigated your difficult journey!! And a special "Thank You" for telling your story; so many of us can find hope from your example.
Your advice underscores what we try to tell new patients. This is your life and you need to find the best possible treatment to protect it. As you mentioned, many urologists do not have a clue when treating bladder cancer.
One small word of caution; you have been successful with your neobladder. When they work they are fantastic! However, not all patients are good candidates for the requisite surgery. Whichever diversion a patient chooses, most are able to adapt and lead full lives, cancer-free!
Thank you again!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I thought I would join to give some hope to folks whose bladder cancer is not responding to chemo and may be invasive. I was first diagnosed with bladder cancer in 1993.
I went through three chemo regimens with urologists who, in retrospect, were clueless. The last one dumped BCG in the bladder until the bladder almost dissolved. I realized that my bladder was probably shot when I had to urinate every half hour, yet the doc I had at the time was all for more BCG.
For a second opinion I went to the Mayo Clinic, located near my home in Arizona. The urologist who looked inside immediately said "that sucker's got to come out!" In December 2000 my bladder was removed and a "neo bladder" made out of colon and bowel tissue. No chemo was thought necessary. Six years later cancer got into my left ureter and left kidney. Bye bye kidney and some of the neo bladder. This was followed by traditional chemotherapy. That was ten years ago and, so far so good.
Lessons learned: 1. Treating bladder cancer requires a urologist who specializes in bladder cancer. A urologist who usually treats infections and rarely sees cancer can kill you by delaying needed treatment due to inexperience.
2. You can do better than an stoma with a bag, the only option usually available to general practice urologist. A neo bladder is wonderful. Not only does it work like a bladder (once it's trained) but it needs no stoma, a constant source of problems and infection.
3. Chemo after surgery may be good insurance against a reoccurrence.
I was 49 when I was diagnosed. I'm now 72 and still going strong.
Diagnosed May, 1993
RC with neobladder Dec 2000
Bye Bye Left Kidney, Feb 2006
The following user(s) said Thank You: Jopo, jeffrx, Maresz, Mizzou