Do I Feel Lucky??

Thank you all for your help. I posted a follow-up and I have no idea where it ended up.

Allen, yes I am a Boiler. Class of '84. 2-1/2 years cancer free with a G3 using BCG gives me hope.

Mike, thanks for all of your help and posts. They have really helped me. In fact, your success with your neobladder gives me hope. What I meant by BCG being fatal was that if the cancer reoccurred and wasn't detected befor it spread. I've asked if that was a possibility and both my uro and the IU doc have said that it is. Small chance but a chance nonetheless. I'm not a gambler by nature.

Anyway, Cynthia hit the nail on the head. I want to know that whatever decision I make is one that I will not regret. Unfortunately, it is apparent that there is no clear cut "right" decision in this instance. So many variables and degrees of risk to consider. BCG seems like the easist choice but to be honest, the thought of a "cure" is appealing because I've dealt with this for 5 years, now face another 3 minimum, and a reoccurance is possible.

Better do some more research and put together some more questions for my doctors...and pray. I will let you all know what I decide. I'm blessed to have found this board and everyone here. Thank you again!

Thanks for the replies everyone. Yes Allen, I am a Boiler, class of '84. I can't wait for basketball season. We should be pretty tough. Love football but it seems we've been cursed this year with all the injuries. 2-1/2 years cancer free with BCG treatments on a G3 gives me hope.

Mike, I've lurked here since August when my reoccurance was found. I really appreciate you insight and all the help you've given to so many, including me. What I meant by BCG possibly being lethal was if the treatments were unsuccessful and the cancer spread before being detected. There is that possibility because I've asked my uro and the doctor at IU that very question. According to them it may be a small possibility but it is possible since this time around the cancer is so aggressive.

I probably will decide to do the BCG, maintenance, cystos, etc... but the thought of doing something (RC) that would "cure" has merit and is appealing in a way. I've been doing this for 5 years and now face another 3 minimum, which at any point the cancer could reoccur. Hopefully if that happened it would be caught in time.

Sorry, I'm rambling now. I'm just uncertain and afraid I'm going to make the wrong decision.

I understand your concern but nothing in life is without risk. To me BCG would be the decision with close watch.

Let me add another option: in Europe and Japan more and more institutions use bladder preserving therapies (i.e. radiation and chemotherapy) for muscle invasive tumors with same or better survival rates as RC. In the US, however, you can only get this in a clicinal trial.

Check out this:

www.ncbi.nlm.nih.gov/pubmed/20811698

Jim,

Since you tolerated BCG before, there is no reason to expect it to be any more lethal that it was the last time. BCG is often effective. It can be lethal if you get sepsis but that is why your uro should not administer it if you have blood in your urine. Since you are now high grade, the standard treatment is the 6 initial doses followed by maintenance doses. Research has shown that the maintenance doses are VERY important. This is sometimes considered unneeded in low grade cases but I think the jury is still out on that one.

Whenever you get surgery for anything that is going to put you under anesthesia you have to sign some paper about the risks and that also pretty much always says it can be lethal.

You have to balance the risk with the reward. If BCG works for you and it keeps this at bay and you keep your bladder, that's a good thing.

If it doesn't work, and you get a high grade recurrence or any progression, then that seems to be the time recommended for RC.

I had my RC 2 years ago because I failed BCG (bad reaction) two years prior to that and mine came back and became invasive.

An RC is pretty always a valid option but surgery carries risks as well.

Ask your uro about the antibiotics that are used when a reaction to BCG happens. If you go that route, it may be worthwhile to have him give you a prescription for them so you have them on hand if there is a problem.

Many, many people get BCG. There are side effects from the medication but that is what shows that it is working. The lethal part is if it gets into your blood stream which should not happen if there is no blood in urine at the time of administration. Did your uro say why he thinks it would be higher risk this time versus last time you got BCG?

Also, consider discussing the dose strength with him. Dr. Lamm indicates that even low doses have shown just as good efficacy and there is a lower risk of severe side effects.

Mike