7 years 11 months ago - 7 years 11 months ago#42332by Alan
My URO had me do 6 BCG, 6 weeks off the another 6 and that is it. His rational is there is risk in every procedure, even a simple catherization. Believe me that is true. I get a nasty bacterial infection with every cysto so he has be take antibiotics after every one.
Someone is welcome to correct me if I am wrong but, Dr. Herr at NYC Sloan does just 6 and that is it. Interestingly my URO actually had some study with Dr. Lamm years ago when he was in San Antonio (UTSA Health)so I went with his (my URO) protocol. I also changed a few habits such as not drinking carbonated drinks-we know what that does to dirty pennies if left in Coca Cola. I can't find it as the web site is gone but, I even read a medium size study that there was some evidence eliminating such drinks appeared to this action. Who really knows?
I do believe in BCG. Also, after fortunately being free 4+ yeas I am also convinced genetics, catching this beast early and treating it is the key. Just adding yet another story to this thread.
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.
Last edit: 7 years 11 months ago by Alan. Reason: typos
Good to hear! I was nervous about your doc there for a second but based on this new info, it sounds like you have a really good one! Better safe than sorry.
If it had been high grade and even more specifically CIS, your doctor likely would not have even put the ball in your court. But as you said, even though it was low grade, it was large so going for another round is likely a good idea but not an absolute must.
Thanks for the response and the congratulations. My urologist did give me stats that indicated I would have a 96% chance of not having a recurrence without the treatments. My cancer was low grade but he indicated the size of the tumor required me to be on the safe side and take the first six treatments. I'm going to take the next treatments because I don't want to kick myself in the butt if three months from now I have a recurrence.
I have read most of Dr. Lamm's research and feel that taking the treatments will be beneficial in keeping the other 4% at bay. That is as long as my body can take the effects of the treatments.
Congrats on the all clear! I'm a bit surprised that the doc put the ball in your court on that one as well. Did he at least tell you the stats on going forward with maintenance versus not?
It is HIGHLY recommended to follow the maintenance schedule. Some things I've read made it sound almost like there isn't a whole lot of sense in getting the first round if you aren't going to follow up. I believe that was in reference to CIS specifically though.
I'd suggest searching for Dr. Lamm's protocol and reading some of his research. I am glad to hear that you've already decided to do the follow up. Grade also is relevant. I forget if you were high or low grade.
It is always better to be armed with information and your urologist ought to be one of the sources of information (but not the only one).
I am going for the treatments but thought it was strange that my urologist put the ball in my court. I've got to admit that I do kind of like the open dialogue that we have and intend to keep it that way.