4 months 3 weeks ago - 4 months 3 weeks ago#57908by Alan
Welcome. With pieces of cancer remaining from a prostectomy you are an unusual case from what many posters see. Keep in mind none of us are doctors so our opinions are just opinions.
A second opinion is almost an absolute necessity from what I read. Most practices see prostate issues as a primary concern and bladder cancer are often down the rung. A University setting or teaching hospital is where I'd try to get to. An MD Anderson, C;eve;and Clinic, Stanford, Sloan Kettering as examples.
One word of caution on radiation. It may be a best treatment answer but, ask questions. IF you have to have a cystectomy radiation can destroy some tissues needed for such a surgery, so you want an experienced and knowledgeable team, one that does at least 25-35 of these a year.
Keep posting as others will add 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.
After 30 months of office visits and visit to outpatient surgery center to investigate further all my tests came up Benign. But my PSA continued to climb to 17.+ without explanation. Pushing and insisting that my doctor find resolve, he finally scheduled MRI at UCLA. They located cancer in area that was not reachable thru any previous testing. At 62 years old I agreed to have my prostrate removed this past January 2019.
After the surgery I was told it was unusually aggressive and had already grown out of my prostrate and into the neck of my bladder. There was 3 small pieces of cancer they could not or did not remove. They have checked my PSA at 6 weeks after surgery, March and June. I was told last week my PSA had increased, I'm having PSA test done every 3 weeks to confirm. If confirmed my Doctor has recommended to have Radiation treatments.
I'm currently scheduling appointment to have second opinion, most people I speak have had their prostrate removed without any further trouble or have horror story's of what happened to their dad, brother or friend. I'm just looking for opinions on steps and possible tests to request. My doctor is actually the department head at large hospital, I do not doubt his credentials but know second opinions are the smart steps. Your thoughts.