I was diagnosed with Stage 2 muscle invasive cancer on April 2. The cancer is located at the dome of the bladder. When the urologist did the biopsy on March 30, he scraped as much of the mass as he could, but did not go all the way into the mass as he felt he would not be able to know if he would reach the outer wall of the bladder or possibly go out the wall into the abdomen. So at this point I am unsure if the cancer is contained in the bladder or has spread. I had a CT scan done about 3 weeks earlier and supposedly nothing shows up on the scan to indicate it has spread. I am thinking I should have a PET scan, or a bone scan, or a chest/abdomen/pelvic CT scan to make sure that it is contained in the bladder (the urologist did not suggest any of these, but an oncologist I consulted with on April 3 did). Could I have some opinions on this from anyone who either did any/all of these or anyone who did not but thinks they should have.
I was given two options: 1) have the mass at the dome cut off and patch the bladder (segmental cystectomy), making the bladder smaller; or 2) ileal conduit, a urinary channel created from a small piece of the bowel. This would result in a stoma with an external, urine collecting bag attached to the stoma and worn at all times. He suggested this option because he said it is the lowest risk for infection, etc. I'm looking at some of the other options with bladder removal – the pouch formed from part of the intestine that stores the urine until a catheter is inserted in the stoma to draine the pouch; or a new bladder formed from the intestine that stores urine until it's released through the bladder – supposedly some leakage may occur at night with this procedure. Any comments on how any of the above procedures worked for you would be appreciated.
Since the diagnosis and doing research at various websites, I have a lot of questions as to what is the best choice. I would like to hear from anyone whose muscle-invasive bladder cancer was high in the dome of the bladder and the choice you made – how long ago, side effects, where you had your surgery done (home town or major center), whether radiation or chemo were involved, any problems with bag, followup visits and any other information you can give me. All of this is so overwhelming, and my urologist told me that my cancer is aggressive and I should make a decision quickly.