It certainly gives us best direction to have a second opion on the type, grade and stage. Also do do your own research and keep informed on latest protocol and treatment. So many of us are intially so traumatized and uniformed about blacder cancer when newly diagnosed we can make wrong decisions and/or cause ourselves great anxiiety. I was initially staged as a "possible" papillary T1a six years ago and thus received 21 rounds of BCG in the first two years as that was the protocal 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 regarding superficial papillary TCC. After 3 recurrences, research and changing urologists due to a move from Texas to Virginia, I learend there was 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. The initial grade of T1a was downgraded to a papaillary TA 1 or 2 with each recurrence. No more BCG. I now understand instillation one dose of Mitomycin immediately after TURB for low grade papillary is widely accepted and practised. 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 Miam was published on low grade papillary recurrences that finally answered a question I had pondered: Do I need to have immediate TURB, fulgerization or treatment when a new growth is seen during a cysto that is seen 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 similiar study has also been completed and published by European Urology. See link on bladder cancer web cafe top of page. blcwebcafe.org/superficialblca.asp
These are great catches! It seems like the JJCO ones go a good way toward addressing some of the questions you've been researching. The one by the Spanish group reassuringly notes that G3 tumors w/o CIS show both progression and recurrance rates similar to low grade/superficial tumors. That's pretty good. The only problem is that, as the first JJCO study you cited notes, with G3 there is a possibility of staging error. That has been something I've been curious about since my pathology report came back TaG3 - the two contrasting sides of that dx didn't make immediate sense to me, especially when the doc said we'd have to do another TU procedure for a more extensive biopsy. No one else seems to have had much difficulty with this, though, and in retrospect I guess I can see why. In any event, I'll have the second procedure next week, and get the pathology report a few days after that. If there's no residual tumor and the more comprehensive biopsy samples come back still Ta, then we'll rest up another month and start the BCG. We'll see how it turns out.
As for you, it sounds like your story line is getting more and more reassuring. Based on the way you described your history, it sounds like your tumor must have been papillary. I can't imagine it being CIS, or even just a flat tumor, and your story proceeding quite the way it has, and certainly your doctor not discussing the implications of tumors like that with you.
Thanks for passing along the great finds, and continued good results with your tx!
Thanks for the referenced links; all these data help to build a picture, I believe. CIS vs no CIS jumps out at me, as it did you. If my wife had G3 with CIS, we might not have opted for the BCG + interferon we are now undrgoing. Luckily, we are in the category where, so far, knock on wood, through three TURs and 5 poke and peeks, there is no evidence of progression, nor CIS.
I'm surprised there aren't larger data bases somewhere. After all there ar 40,000 new BC diagnoses annually and 13,000 RCs performed. (my numbers approx through recollection).
Here is a tumor morphology study of G3 superficial (mostly T1), that specifically excluded co-contaminant CIS. Over half the patients were treated by TURB only and only 10% or so were treated with BCG.
Surprisingly enough overall ~75% of the G3's were progression free out 10+ years. A non-papillary sessile tumor seemed to be the biggest indicator of progression. Look how nice and flat these curves go after 5 years!
Tumor morphology is something I have not heard too much about in bladder tumor prognosis, not sure how much wieght to put on this study, but it is interesting. It also shows how skewed the progression figures can get when the statistics include co-contaminant CIS. Here is another reference regarding the difference in prognosis with CIS;
Rosemary - congratulations on your (mostly) "unremarkable" results! In my case, an ultrasound was used to screen me for the cause of my hematuria. Results good, except for a small kidney stone, and then the bladder tumor. The u/s doctor was gregarious and informative until he got to the tumor - had to learn about that a half hour later from the doctor who ordered the u/s, and who then referred me to my urologist.
I would like to recommend a CT scan, to those who are borderline, and have not had one. I asked for a copy of mine taken at last biopsy. (Super Doc said that if nothing else, it could be used for baseline)...
When I read it this week, it was rather comforting and normal sounding. Everything was so "unremarkable" except for a thickening in the fat layer that was "consistent with bladder carcinoma"...
I mean, it reads everything all the way up to the pancreas and liver...
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006