BCG Update

Bill,

Indiana is good choice. I just wanted to let you know that self catheterization and neobladder are NOT necessarily the same thing. Prior to the surgery, I asked my uro about catheterization and he said "Why in the world would you want to that?". Pretty much said it shouldn't be needed and if it was, to get myself to an ER or urgent care center.

It is different with women. They have a much higher probability of having to self cath.

Also, once your bladder and the all-so-constricting (on the urethra) prostate are out, there isn't anything blocking the way for a catheter if you had to get one done at a hospital. In other words, the part that is painful now will be gone after RC surgery. If it gets to surgery...

If you are getting BCG and you are having problems with the prostatic sphincter, ask your doctor about a TUIP www.mayoclinic.com/health/tuip/MY00599 or the microwave procedure (TUMPT) www.mayoclinic.com/health/tumt/MY00607 that can alleviate the symptoms of BPH and give a better opening (less constriction from the prostate on the urethra).

If you are doing BCG, you may want to try to get the procedure after your first series and before you start the maintenance. I had a TUIP, but they discovered I had a recurrence that was invasive so I never found out if it helped or not. Went into RC surgery pdq after that.

I had originally been scheduled for the TUMPT (painless procedure done in the Uro's office but takes 6 weeks to a few months to be truly effective). That's when I had positive cytologies and we started trying to figure out where it was so the prostate issues went on the back burner.

It's probably worth you checking out the procedures and discussing with your uro. I would have done it if I would have been able to continue to BCG.


Mike

Again, what I am doing is "Praying for the Best, but Preparing for the worst".

I know I would have to first, have long, involved discussions w/ my Dr's, and a lot depends on the Bc, prior any Bladder removal, if required. However, "IF" I have a choice, and "IF" it comes to removal, I believe I would have to go for the Indiana Pouch.

I do not know why, but the "cath-procedure" for me is VERY painful. Cathing is not getting any easier after 3-BCG's. They went from 16's to 14', which helped a little, but still painful. Maybe the fact I have BPH lends to the pain, but I CANNOT imagine having to "cath" myself, as would be required, from time-2-time, by a Neo.

If I had a Neo, I am afraid I would not take proper care of myself, due to the pain of "Cathing"

Bill..since you're on the Vesicare and Pyridium i would not double up the dosage unless you speak to your doctor first. Drink lots of water and avoid caffeine. Pat

Hi Bill

I know from experience what you are feeling. It's not a walk in the park, and yes the side effects are progressive. Regarding the peridium, are you taking 2 tablets at a time? I began with just 1 tablet, and felt no relief.
When I started taking 2, 3 times a day, it certainly reduced the burning and the pain in the bladder.
Hope the side effects subside soon.
Jack

Yep! Finally got them to use a 14-cath this time, rather than the 16 they used the first two times. Although the 14 was not as painful as the 16, there is still pain w/the cath??? Numbing gel is used!

The side effects this time (#3) are FAR worse than the first 2. Horrible burning, aching, nausea and peeing is like passing burning gasoline. I am on "Vericare" and "Peridium" (turns your pee orange), but still it seems the side effects are progressive (worse w/each treatment). No visible bleeding as yet

Have 3 more BCG-treatments in round #1, then six-weeks later I get my first "cysto" (1 every 3-months for the first 2-years).

My Uro does bot do followup TURB's unless he see's something during one of the "cystos". I was graded as "T1 high grade".