I'll ask my sister-in-law if she'd like a copy sent to her (she's the email contact as my brother doesn't do internet), she did print out your post that I emailed to her earlier and was taking it home for John to read. I'll let you know when I hear from her as to his thoughts on the subject of watchful waiting.
Lou, I am glad I have accomplished alerting at least one person to possible alternative choices for papillary low grade recurrences. I am sure there are many of us out there feeling less threatened and more confidant to do watchful waiting over immediate TURB, fulgerization or treatment once these newest studies are read and understood. I have the complete in-depth study in my document file that details exactly who, what, where, and why on the University of Miami study. I would be glad to email a copy to you or your brother if you so desire.
Thanks for the information, I've just forwarded this posting on to my older brother as he's in the same situation as you and I know he is very stressed each and every time he has to have his cysto and then followed with whatever treatment is suggested by his urologist. Right now he has three small areas they're going to remove that were seen on his latest cysto of a week or so ago, he was diagnosed in late 2004 or early 2005 (I'm embarrassed that I don't remember exactly when he was diagnosed, but then I've been through my own battle with BC [12-2003] and that may have fogged my memory where others are concerned).
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.