It is important for me to reach those of who have been in /or are in my "same boat." I was initially staged as a "possible" papillary T1a six years ago and thus received 21 rounds of BCG in the first two and a half years. That was the protocol at the time of my diagnosis in that medical center. I experienced much anxiety and trauma. There wasn't any published test trials or concentration made in the United States urological community at the time that distinquisted superficial papillary TCC from other types of bladder cancer. After my having 3 recurrences, research and changing urologists due to a move from Texas to Virginia, I learned there were tests to confirm or deny that "possible" T1a and
the great difference in treatment plan should the pathology report differ in either a higher or lower type, grade or stage. It certainly gives us best direction to have a second opinion on the type, grade and stage of our bladder cancer. Be diligent in doing your own research to keep informed and updated on the latest and most recent protocol and treatment for your particular diagnosis. Get a copy and read your pathology report, your operating room report, your physician's report. So many of us are initially so traumatized and uniformed about bladder cancer when newly diagnosed we can make wrong decisions and/or cause ourselves great anxiety. My initial grade of T1a was downgraded to a papillary TA 1 or 2 with each recurrence. No more BCG. I now understand instillation of one dose of Mitomycin immediately after TURB for low grade papillary is widely accepted and practiced. Further, I have seen the debate that BCG does NOT help to ward off recurrences for papillary TCC. In 2003, the first report of a long term study from the University of Miami was published on low grade papillary recurrences that finally answered a question I had pondered: Do I really need the risks, costs and post surgical discomfort caused me by immediately having a TURB, fulgerization or treatment when a new growth is seen during a cysto and recognized as a low grade papillary recurrence? The answer from that long term study, beginning in 1992 and ongoing today says "no". I am currently doing "watchful waiting on my 4th low grade papillary recurrence. A similar study has also been completed and published by European Urology. Read the top of the page of this link .
blcwebcafe.org/superficialblca.asp Also read Wendy's excellent and informative post on European recommendations for superficial papillary and maybe save yourself lots of needless tests (IVP etc), discomfort and anxiety. It is the first subject posted in this superficial forum.