I went through this a year and a half ago with my urologist and also got a second opinion at UW medical Center in Seattle. I had a single T1G3, after my TURB I had the 6 BCG treatments and no maintenance BCG since. I have been free and clear of cancer for 1.5 years. From what I understand there are no studies that prove BCG maintenance is really beneficial for papillary tumors.. although there are some "loosey goosey" studies that suggest it may be... So, many people go with the maintenance... however many urologists don't believe the "loosey goosey" (Dr. Lamm)studies and see additional BCG treatments as a waste of time and potentially damaging to the bladder/risky.
I would listen to your urologist and take all of the opinions here with a grain of salt. If in doubt get a second or third opinion from other urologists.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA
THANKS WENDY.. I HAVE DECIDED TO HAVE A CONSULTATION WITH MY URO ABOUT
THIS MATTER.HE HAS A LOT OF EXPERIENCE WITH BLADDER CANCER.
AS YOU SAID, ALL OF THIS CAN BE VERY CONFUSING..SOMETIMES TOO MUCH
INFORMATION CAN BOGGLE THE MIND.
THRE ARE PATIENTS WHO THINK THEY SHOULD NOT ASK THEIR DOCTOR QUESTIONS.
I BELIEVE YOU SHOULD ASK AS MANY QUESTIONS AS YOU THINK ARE NECCESARY
TO MAKE THE RIGHT DECISIONS ABOUT YOUR HEALTH.
WITH ALL THIS THERE IS THE EMOTIONAL ASPECT....SOMETIMES IT IS HARD
TO KEEP YOUR MIND THINKING STRAIGHT.
I WILL LET EVERYONE KNOW THE RESULTS OF MY MEETING.
ONCE AGAIN, THANKS FOR YOUR INSIGHT.
AT THAT TIME.
IN MY RESEARCH I HAVE ENCOUNTERED PROS & CONS ABOUT THIS.
The more research you read the more pros and cons you'll run into, conflicting findings, disagreements in timing, schedules, etc etc. It's part of the territory (cancer and its treatments)...there are no hard fast rules regarding BCG, maintenance and when to stop it and go for radical surgery instead. That's why a good doctor is so important, a uro-oncologist if possible and one who has experience with blc. That said, you will still find glaring conflicts of opinions regarding schedules and follow up from one good doctor to the next.
This means there is room for patient preference to come into play (and that goes for all cancer treatments!). Also doctor preference. BCG can be continued almost indefinitely if there is no recurrence---if a person can handle it...
Most experts are agreeing these days that maintenance is good for high risk bladder cancer, with or without concommittant CIS/carcinoma in situ-which places a person in a higher risk category.
Try not to compare notes with other warriors and expect the same game plan or you'll go insane! It's good to know what others experience, but can also be extremely confusing.
THANKS FOR THE REPLY...THE THING IS, I HAVE WHAT I THINK IS A REALLY COMPETENT
DOCTOR.BASICALLY,HE SAYS I DON'T NEED BCG M.T.S AT THIS TIME.
I WILL BE GETTING ANOTHER CYSTO 12-19-07...WE'LL SEE WHATS WHAT AT THAT TIME.
IN MY RESEARCH I HAVE ENCOUNTERED PROS & CONS ABOUT THIS.?????
ANYWAY,RIGHT NOW I FEEL VERY GOOD.
I had one 6 week round of BCG's, then 3 months of no treatment, then 3 BCG's, then 3 months off, then 3 BCG's. So, I guess that's initial treatment x2 maintenance treatments. My body did not tolerate BCG's well at all, so the Dr and I decided that it was not worth it for me.
My opinion about it is this... IF your body can tolerate the BCG and the research for your stage and grade shows statistics that favor non-recurrance, then I say GO FOR IT.
How are you feeling about things, Max?
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006