Sonja,
My first question to you would be is there a medical problem that would make a Radical Cystectomy (Bladder removal and reconstruction) not advisable? Or have you voiced that you would not have your bladder removed to your original Urologist?
I underwent the bladder saving protocol through the group that pioneered the study at Massachusetts General Hospital in Boston. It was a nine month protocol that included 40 trips to radiation therapy and 12 trips to chemotherapy. It is a very hard protocol to do physically not only time wise but the toll it takes on your health during the process. At the time I entered into the protocol I did not know I also had CIS or the indications of what this could mean all I was told was that I was T2 G3 and a good candidate. After completeing the protocal the cancer returned again and again and in a little less than a year of ending the protocol I had to have what they call a salvage RC. Knowing what I know now I would have gone straight to RC as my choice of diversion was limited by the fact that I had had pelvic radiation and the fact that a tumor had formed very close to my urethra to do a neo bladder even if they could. We traveled to Chicago to use a surgeon who specializes in urinary reconstruction following pelvic radiation and I was able to have an Indiana pouch as all anyone in Boston could offer was an external pouch. This last January I lost a kidney do to complication of radiation scaring.
Now having said all of that if someone did not have CIS the choice of trying to save the bladder would ok as it does work out for quite a few. But even then there can be lasting effects from the chemotherapy and radiation. Neuropathy (nerve damage), lose of bladder elasticity causing lose of bladder volume, serious complication from high volume extensive chemotherapy during treatment, intestinal damage along with other risks. Now having an RC has its obvious draw backs as well but I can tell you it would have been a lot easier on me if I had not done both. I would have still had chemo but a much shorter course and skipped the radition all together. There are no free rides here and the choice is of course a personal one but do your homework and you may even wish to print out some of what follows to share with your doctors. I did a search on bladder sparing for blc w/ CIS and have included treatment guidelines from the NCI and AUA they are the first two. I hope this helps and know we will be here to support you no matter what you decide to do.
Cynthia
(Some of these you may have to register to read)
NCI Treatment Guidelines
www.cancer.gov/cancertopics/pdq/treatment/bladder/healthprofessional
UroToday from the AUA Treatment Guidelines
www.urotoday.com/browse_categories/bladder_cancer/treatment.html
Study comparing bladder sparing and standard treatment for T1 G3 showing CIS as being an indicator for poor outcome
cat.inist.fr/?aModele=afficheN&cpsidt=19238514
By Michael J. Droller, American Cancer Society the report on bladder sparing w/chemo and radiation begins on page 301
books.1d5920f4b44b27a802bd77c4f0536f5a-gdprlock/books?id=q19Iox_cJNUC&pg=PA304&lpg=PA304&dq=Bladder+Sparing+and+CIS&source=bl&ots=lpsQ6wqBEG&sig=vnvKsTXs-ljoZuCbJ6IWGrsBmnY&hl=en&ei=TL6_SbbYNMjgtgeui7FR&sa=X&oi=book_result&resnum=3&ct=result#PPA299,M1
Bladder-Sparing Treatment of Invasive Bladder Cancer
From Cancer Control: Journal of the Moffitt Cancer Center
cme.medscape.com/viewarticle/408997_11
Radical Cystectomy for Transitional Cell Carcinoma
of the Bladder: What Percentage of Patients
Qualifies for Bladder Preservation Protocols?
Vitaly Margulis Joshua M Stern Arthur I Sagalowsky Yair Lotan
Department of Urology, University of Texas Southwestern Medical Center, Dallas, Tex., USA
content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ArtikelNr=106524&Ausgabe=233774&ProduktNr=0&filename=106524.pdf