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What is interesting is what they call the rule of thirds. My urologist told me about this also. Although it may be oversimplified it says that of T1G3 patients treated with BCG, one third will be cured, one third will have a recurrence and have to have a delayed RC and one third will die of bladder cancer.
DX Jan 2006 - T1B G3
RC - Neobladder June 2006
Here is part of the conculsion but the entire study should be required reading for anyone with T1G3.
In patients undergoing conservative therapy for T1G3 disease, the evidence suggests the need for a repeat TUR and appropriate imaging to ensure that the tumor is adequately staged. If pathology demonstrates T1G3 disease in the absence of other high-risk features (noted above), intravesical therapy with induction and maintenance BCG are essential to decrease the risk of recurrence and progression. The use of maintenance therapy varies across published reports and practices, but we adhere to the “6 + 3” BCG regimen outlined in the SWOG 8507 study (also known as the “Lamm regimen”). The patient needs to be counseled on a roughly 30% probability of no progression or recurrence with the 30% risk of requiring a cystectomy due to progression of disease before committing to conservative therapy. Conversely, the patient should consider that immediate cystectomy can result in five-year disease-specific survival greater than 90% but at the expense of living with a urinary diversion.
Since you said your tumor was too big to take out all at once, I\'d be sure read and evaluate carefully. I certainly can\'t tell you what do but I know what I\'d do after looking at these numbers.
Keep us posted on what UM has to say.
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 upper tract metastases(at 53)
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
T1 is a rough diagnosis it sits right up there on that fence. I have had many conversations with people trying to make the decisions on this one. If they have a Radical Cystectomy they will always wonder if they could have avoided it with treatment, but being wrong weighs heavy. No decision you make is without consequences not an easy spot to be in. But it looks like you are doing your homework and talking to people who know where you are.
Always remember that this forum is here is not to give medical advice as we are not doctors, but to help you know the questions to ask your doctor. Being your own best advocate is mandatory and what you learn here hopefully will facilitate good communication between you and your doctors.
Much has been written about understating of T1 bladder cancer and I am glad that has been covered here.
Good luck and I am glad you found us.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Big decisions ahead. I saw my uro yesterday (who is great) and she was somewhat surprised I was even considering RC at this stage. She wasn\'t against it, she just said 90% of her patients want to keep the bladder. So do I, but I want the best chances for survival with the best quality of life. I mentioned the 1/3 rule and she agreed, but also said there are no guarantees with any course of treatment. She works very well with the UM Cancer Center so I feel after my consult with them on Friday, the path will be a lot more clear. The best news though is next week I get these damn ureter stents out, thank God! At least I can get back to more a normal activity level with out being sore or the occasional slight bleeding. Thanks for all the good advice -
Yes, It is a hard decision when facing T1G3. I think that your doctor is right in saying that 90 per cent want to keep their bladder and choose conservative treatment. I went to Mayo and they also seemed suprized when I mentioned going straight to RC, but when I pressed the issue, they admitted that RC would give the best odds for a cure. I wish you luck in you decison. Deciding which course of action to take was the hardest thing I have ever had to do. Keep educating yourself on BC and remember that in the end it is your decison, not a doctors or someone else.
DX Jan 2006 - T1B G3
RC - Neobladder June 2006
Went to UM for the consult - met with Dr. Hafez who my wife and I really like. I\'m getting restaged tomorrow and he gave us 3 possible scenarios. 1- no evidence of disease and begin BCG treatments. 2 - cancer present not yet in the muscle layer means an RC. 3 - cancer present in the muscle means chemo and then another TURBT so decide the next step. We\'re very glad I\'m getting restaged - definitely worth going to a major cancer center and seeing a world class surgeon.