BCG Decision - Help

16 years 5 months ago #8433 by wsilberstein
Replied by wsilberstein on topic BCG Decision - Help
Have you asked your primary care physician or another doctor you trust who he would go to in your area? If there are plenty of urologists around, hopefully you can find out about their reputation in the community without asking the urologist's office what the community thinks. When I was looking for a new urologist lots of people I knew told me about friends with bladder cancer  and who they went to. Maybe the urologist at the teaching hospital can recommend someone near you.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician

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16 years 5 months ago #8430 by Rosemary
Replied by Rosemary on topic BCG Decision - Help
Connie,

I just don't think that any of us can tell you what to do in this situation. We can tell you what WE would do, but that just isn't the same thing is it?

I hope you come to terms with a decision that you are comfortable with. There just isn't a way of saying what will or won't happen with treatment.

I wish I was of better help.

Your BC friend,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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16 years 5 months ago #8426 by ConnieOnAQuest
Replied by ConnieOnAQuest on topic BCG Decision - Help
Some further info -- I live in a suburb southwest of Chicago; there is no shortage of urologists around here. The urologist I've been going to for the last 5 years is 15 minutes from my home and office. That's the one I was going to before consulting at and getting the TUR at the large teaching hospital that takes 1-1/2 hrs. to get to. HOWEVER, I had some problems with his office:
--Communication issues (phone calls not returned, lack of communication between nurses and staff, being told they sent me something when they never sent it, etc.)
--When I originally was trying to set up BCG at this office, I thought it was going to take an Act of God. It was a struggle just to get someone to call me to set the treatments up, then they acted like I was inconveniencing them. Each time I spoke to someone different, because the last person wasn't there. They finally worked out a plan involving different times, different nurses, and a staff member told me "We're having difficulty working around YOUR schedule." Since I work days like most people, and was willing to leave work early, I couldn't understand that. Oh yeah, and when a schedule finally was set up, the person I spoke to wouldn't tell me what it was. She wanted me to call in two days to talk to someone else.

I want my questions answered and my phone calls returned promptly should I have side effects or concerns. But I also want my cystoscopies done by someone who does not cause me pain and who is familiar with my case. I want the same nurse doing my BCG each week. But I can't have it all.

I feel nervous about making a decision and feel paralyzed. I suppose I could pick up the phone book and start calling urologists in the area to see who does the most BCG and how they do it. I can tell them my concerns about patient communication, but, of course, they'll all tell me they care about their patients and communicate well with them -- don't they all say that? I mean, who's going to say "We've been known to drop the ball on returning phone calls, we get confused amongst ourselves whether one of us took care of something for you or not, and, oh yeah, we don't always take your side effect concerns seriously." Yet I have run into more than my share of these.

As for bcg protocol, I get the feeling the rolling around isn't crucial, yet I can't let it go.

This whole thing is a way more complicated decision for me than I thought it would be.

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16 years 6 months ago #8409 by brewster
Replied by brewster on topic BCG Decision - Help
Rolling around, which for me includes shoulder stands, downward dog, and various other weird positions, makes me feel like I'm doing my part to give BCG its best shot at working. It also reassures me that it is covering the upper portion of my bladder which might be exactly where the little devils are trying to set up camp and where the BCG, because of gravity, may not reach. Granted I go in with my bladder close to empty so that probably means it's smaller and normal sloshing may cover it all - but I feel better being sure about hitting the top. Hey, it's my life that's at stake so a little extra effort is a small price to pay. Also, I do not start drinking copious amounts of liquids until the two hours is up because I don't think it's a good idea to dilute/weaken the BCG before the full two hours is up. Just my two cents. best, brewster

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16 years 6 months ago #8404 by Rosemary
Replied by Rosemary on topic BCG Decision - Help
Star,

The brochure given to me at the time of BCG said to lay down and roll a quarter of a turn every 15 minutes. I cheated a lot as I would just get in my easy chair and raise my legs up and then shift around in the chair. Mostly, I did no rolling at all and just did what I wanted to do.

Warren,

It's so good to have you here.

Regards,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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16 years 6 months ago #8402 by wsilberstein
Replied by wsilberstein on topic BCG Decision - Help
I've refrained from commenting on the rolling around issue so far because I have no experience with BCG. I was Mytomycin C'd instead. But I didn't have to roll around for that. Now as I say, I have no experience with BCG, and I'm not a urologist, so don't let my MD make you think I must know what I'm talking about... but, the bladder expands when it is filling and contracts to empty. Unless the urologist gets air into the bladder when he instills the BCG, every surface of the bladder is in contact with the BCG no matter what position you're in. Well I suppose there could be some air in there from the instillation. I've had that, and believe me, farting through one's penis is a weird sensation, but I can't imagine the urologist getting enough air in to necessitate rolling around for the BCG to get where it needs to be.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician

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