I have a meeting scheduled with my Uro after my 6th bcg this Wednesday. I want to ask him what he envisions as the next steps depending on my check in 6 weeks. I do hope that the bcg has arrested the Cis and I go on a maintenance program, but I know that it is also possible that I will have to undergo a turb and another 6 BCG treatments. If the bcg doesn't arrest it is it likely that the next series will? How many series can you have before they change protocol. I did get this early, and it was deemed non invasive, and started bcg right away. This is my first journey, and there is so much uncertainty.
2 years 5 months ago - 2 years 5 months ago#52702by Cynthia
Welcome to our community. I have been following your thread and your concern about progression is understandable. Time will help but in the early days it is hard to think of anything else isn't it? The problem is a lot of your questions do not have an answer again time will tell however CIS does have a very good response to BCG the statistics are with you. It sounds like you need to sit down and make a list of your questions and talk to your Urologist. After your next check you should have a better idea of what is next and what the proposed BCG maintenance plan is. Keep us updated and I hope to hear many all clears from you.
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
Both because of its effectiveness and for your peace of mind, l would recommend that you really insist that your uro prescribe BCG maintenance. The protocol I was on was three weeks of BCG every three months for two years . And yes, the side effects increase as your body becomes sensitized and the immune system reacts to the BCG. There are several other protocols for maintenance that are used, and there is no evidence that one is any better than another.
Should the side effects become too much, and they often do, the dosage can be reduced significantly with no loss of effectiveness.
Sorry, but our Forum is not set up to allow private communication due to privacy issues.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
2 years 5 months ago - 2 years 5 months ago#52695by Alan
Adding exactly the same thoughts as Sara Anne. The vast majority have a good outcome with BCG. Does it ever leave my mind? Not completely but, I am at peace either way. Lot's of others we know have far worse problems. Someday something will get me however I just take one day at a time and enjoy it even more. The result is being more stronger and effective with my life!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Thank you again Sara.Anne. My Bro told me that there was a 80/20 cure rate for this, but it drives you crazy not knowing what the progression might be. I jumped right on this when my symptoms appeared, and my URO got me on BCG right away. Things are constantly running through your thoughts, because of the unpredictability of bladder cancer, and my fear is having it spread, although Have had so many people including yourself cite the successes with BCG. If a second series of BCG or a maintenance series is my follow up, will the frequency of BCG change the side effects, so far I have not experienced any. I want you to know how valuable this Forum is to actually exchange info with people who share the same concerns. Do you ever allow people to converse with you off line, for you are certainly knowledgeable? Thanks again for your insight.