an update…..about 15months post turbt/BCG

Been a whole since I updated here.  I'm now 42 (41 when for Turb) and always been a non-smoker.  Had surgery Jan 22, 2009.  Ran through 6 weeks of BCG.
Started maintenance BCG in November.  We're going to do that every 6 months (or 3 months after every scope for two years then re-evaluate).  My tumor was classed as large, aggressive and high-grade.

About to do my last quarterly scope today.  We'll go to every six months after that.

 So far its been clean.


The scope has become a non-event.  I get a bit worked up before-hand, but the procedure is nothing to me.  I know when to relax, take breaths, etc so I almost feel nothing.

 Problems are some leaking (didn't happen after the first 3 or so scopes) for some time afterwards that improves in a few weeks.  No problem stopping/starting….it just leaks a little afterward.  Still can't pee straight and I imagine that will always be there with this stuff going on.  Everything is usually tender for a day or so after the scope and I'm usually exhausted the day of (more mental than anything else).

 We're going to stick with the 6mp scopes forever.  BCG – we'll discuss more.

 BCG kicks my butt.  Some don't have big issues with it.  It makes me real tired and I was already there (fatigue problems since Desert Storm) and this doesn't help.  My first maintence BCG resulted in it sluffing off a LOT of scar tissue and I had some significant bleeding for a day or two.  Wow.  It was like how things looked after surgery.

 I still get some bladder pain when its full (I drink a LOT of water these days).  It also hurts a good bit more if I get hit in the groin/lower abdomen area more than before.  My 4yr-old accidentally kicked me there the other day (lightly) and I just about hit the ground.  All that 'stuff' is much more sensitive, but it's manageable.  Just protect.

 I have to wear underwear that is supportive as well.  Can let stuff move around freely or it will feel like someone kicked me….  Irritating, but not really a problem.

 Overall I think I'm doing pretty good.  I'd like to get back in shape.  Don't really care about my weight.  About to go around with the VA on this and other issues we believe are tied to my service time.

doug gregory Author