Sorry to hear about your issues. But do not worry about the cancer "getting outside the bladder." During the procedure to cut out the papillary tumor the doctor made a small cut deeper than he intended...but no cancer cells "escaped." That is not how cancer can spread. It spreads by growing into the deeper layers and then into the lymph nodes.
As your doctor has probably told you, CIS is always high grade and requires additional treatment. The usual treatment is a form of immunotherapy called BCG (sometimes a different substance is used) which stimulates the immune system to reject the cancer cells. BCG is very effective for CIS. I had the very same diagnosis you have over 11 years ago, had BCG and have had no sign of cancer since. You will do as well!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I have been diagnosed with bladder cancer. I had a turbt procedure in which they took a biopsy of a suspicious red patch (biopsy came back as CIS) and what they suspect was a non-invasive papillary tumor. They can’t determine the grade of the papillary because the surgeon perforated my bladder And then fulgurated the affected areas. I am terrified now with the CIS and tumor with the perforation that I will have cancer cells now outside of my bladder where they can grow on other organs of nodes.