Strangely enough i have felt that i was one of the lucky ones..i didn't have much time to think about it..it was already invasive. Not having to go through 3 month check ups and BCG would have just prolonged my agony. I know that sounds strange.
But i had to move and move fast. Just like you ..huh? bladder cancer?...is there such a thing? I dutifully followed instructions and went to the local uro and had my TURB and my diagnosis within one week. The next few days i started researching for the best surgeon in the country..that is the SINGLE most important decision you can make...where to go and who does it. I was in for a second opinion at Memorial Sloan in one week with the grand poobah of bladder cancer Dr. Harry Herr. He took one look at my path slides and said "Re-Turb"..which he did 3 days later after other testing took place. He's a master of the scalpel..he got all of the remaining CIS and the margins the local uro missed. Very disturbing paper just came out saying that in 50% of the cases pathology is wrong by the local uro.
At any rate i then researched diversions as i still needed a cystectomy...it does have a tendency to come back but i had some time to do that and to pick the surgeon who was world class in female surgery. Big difference that you don't have to worry about.
The best thing you can do for yourself is first make sure the pathology is correct by either seeking a second opinion or sending the slides to a top rated cancer or urological center...MSK, Johns Hopkins, Cleveland Clinic, USC/Norris.
Its pretty common place and recommended by the top Cancer centers to have a Re-Turb within 6 weeks and no longer than 3 months just to make sure those margins are clean. There's where your second opinion at a top center comes in..you won't regret it.
If BCG is recommended give it a shot...but if it comes back more than once...don't try to save that bladder because CIS can be very aggressive and you really don't want it to find another hiding place in your body.
Take it one prudent step at a time and make sure you're with the best. If you need some help finding that center or Uro thats something i can help you with..just let me know where you are.
pat
Ok should have figured it out..Oklahoma.....oh geez..there are no NCI designated centers in OK...not sure where you are situated?..closest NCI center maybe St. Louis where Dr. Adam Kibel a top uro is situated at the Barnes Jewish Hospital..
www.siteman.wustl.edu/DoctorProfile.aspx?memid=932&Type=Patient
Next thought would be MD Anderson in Houston..look up Dinney, Kamat or Grossman..all tops
www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/genitourinary/doctors-staff/index.html
pat