Your father's case just screams for a second opinion!! Any time that there is doubt about a diagnosis or treatment plan or a situation that is out of the normal it is very important to seek a second opinion at a place that sees and treats many cases of bladder cancer. These centers include MDAnderson, Johns Hopkins, Memorial Sloan Kettering, University of Chicago, Stanford, and USC among others. If you let us know where your father is located, geographically, some of our members will no doubt have suggestions for you.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Some back story - my father was diagnosed with high grade muscle invasive bladder cancer, and immediately started aggressive chemotherapy. After half a dozen trips to chemo every 2 weeks, they decided to try and remove bladder via robotic surgery, and either replace or divert. However, the bladder had a lot of scar tissue and was basically pasted to the pelvic wall and not able to be removed, and also was not able to be diverted. Biopsies were taken of the matter that appeared to be scar tissue inside and out...and it was not cancerous. So it seems like the cancer isn't present? PET scan shows no signs of it having jumped to other sites in the body.
My question is, where to go from here? Second opinion? Any other options? Pretty frustrating.
The bladder doctor has basically said thees no chance at removing bladder in future either, and it's kind of like he told us to go on our merry way. No real checkups or anything scheduled, how are we going to know the status of the cancer?