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BCG Decision – Help
I have to decide where to get my BCG + maintenance treatments done. The facility I am being treated at now is a 1-1/2 hour drive from my home. This doctor claims one does not have to roll around after the treatment, and I would be fine getting the treatment and then driving home. Personally, I would prefer to get home quickly and roll around. That is how I did my 6 treatments in 2000 and I had not a single side effect, and no tumors for 7 years. I say, if it isn’t broke, don’t fix it. This doctor seems to want to discourage me from getting treatments somewhere else. He acts as if I’m taking chances with my bladder because his nurses are “specially trained” in BCG. But I want the option of being home soon after treatments, and I also do not want to have to take time off of work with no pay to travel a 3-hour round trip for treatments. I can’t afford to do that, and I am about out of paid time off of work for the year.
Is this doctor in the minority to say that one does not need to change positions during the two hour “holding period” ? Do I need to be concerned about who delivers the BCG into my bladder? What questions do I ask? I’m afraid that, with the higher risk of side effects with maintenance treatments, I may get someone who will make a mistake with serious consequences.
Thank you for any responses.
Connie
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19 Replies
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I don’t have anyone to refer to you since I am deep in the heart of Cajun Country in Louisiana. Sorry.
I do have a few things about the rolling. No one in my urologists office mentioned the need to roll. The paperwork I took home mentioned something about rolling if your doctor tells you to, but he didn’t tell me anything. I did, however, roll 90 degrees every 15 minutes like most people I know that have had BCG treatments have done. Though I never asked him directly, he says the immune response can take place so long as it is instilled in the bladder. I don’t have much more to offer on that. But, go with your instincts. If it worked before, why not do it again? It certainly can’t hurt.
My urologist’s nurse instilled my BCG treatments for me. She is the only one that does them at his office, and she was very gentle. No problems (she also used a pediatric catheter, which helps). I wish you luck in finding a place to get your treatments.
“I am third.”
-Gayle Sayers
Connie,
Here’s the responses I got from our other group:
I’m very happy with Dr. Gary Steinberg at the University of Chicago
Hospitals. It’s located in the Hyde Park area of Chicago which is very near
the Museum of Science and Industry.Here is the website..
http://www.uchospitals.edu/
________________________________Wendy–my husband went to the University Of Chicago or Edwards hospital
in Npaerville there are urologist there— Ann
_____________________Why isn’t your doctor giving you a referral to someone closer to you?
________________
I have been a patient of Dr. Gary Steinberg at the U of C for bladder cancer since 2001. I would recommend him and the U of C to anyone. I would avoid anything other than a major teaching hospital such as U of C, Loyola, or Northwestern.
My Cousin lives in Joliet, and recommended: Advanced Urology Associates. He said they are affiliated with a large Cancer Center (forgot the name). I know he lives south of Chicago, but I don’t know how far this would be for you.
Their website is:
Advanced Urology Associates:
http://www.advuro.com/index.shtml
Good Luck with your search!
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Hi Wendy,
Thank you. I would greatly appreciate it if you’d ask your email group on my behalf for a recommendation of a urologist in the southwest suburbs of Chicago. I have to start BCG in 3 weeks, and I have no idea where I’m going to go.
Connie
Connie,
We should ask our email group for a referral of a good uro in your area. If you don’t feel like joining I’ll ask for you and let you know the responses. Hopefully there will be some names coming up on this forum thread too.
The rolling thing….it’s about an air bubble that can be present. These days I’m hearing more and more that rolling is not really necessary, but hey, if you feel like it, rock ‘n’ roll, honey.
For what it’s worth I think you should get a doctor closer to home, life is tough enough as it is without the travel, extra expenses and the aggro this guy obviously causes you.
Best,
Wendy
Warren,
When I asked the urologist at the teaching hospital to recommend an office closer to home for BCG treatments, he said, “Well, it’s YOUR bladder”, then said he didn’t make recommendations, but did mumble a name of someone he knew of who is in my neck of the woods.
I don’t know of anyone else locally who has bladder cancer, or who knows of anyone who has it, but I will ask my primary care physician. Thanks to you, and all of you, for your comments.
[quote author=ConnieOnAQuest link=topic=1214.msg8426#msg8426 date=1191019479]
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.
[/quote]
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
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
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.
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
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
[quote author=ConnieOnAQuest link=topic=1214.msg8381#msg8381 date=1190861839]
I This doctor claims one does not have to roll around after the treatment, and I would be fine getting the treatment and then driving home. [/quote]
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
ROLL AROUND?????? After all my BCG treatments now going for 6th come Monday-JuST FINSHED THAT 7TH TURBT-in a yr and 1/2 Never was told roll?????
Just hold for 2 hours bleach/flush and drink. what does rolling do for ya???
Is for discomfort? or just to keep it in you? I leave after BCG nad feel no different nor pain-till you pee but to be expected so just wondering about this roll around.
;) Star
I think one of the major questions to ask if you are going to look for another place is: How often do they do these treatments. The more treatment preformed would tend to mean to me that they have worked out the “kinks” by now. I am sure that there is more than one trained doctor in your area, unless of course if you live in a very rural area. They should not be afraid to have a consultation with you in person or by phone. I would try phone first (you won’t be charged) and you won’t have to take time off work. Make sure you keep copies of all of you records too. They can send for them but that is so time consuming. Make a folder and keep it with you, add any new paperwork that you get to it immediately. Three hours driving alone getting these treatments sounds almost counter productive. There is enough stress with this disease without adding travel (unless you can stay at a hotel, to the mix.
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Connie,
The more I thought about this, the more I think you should follow your instincts.
You are the one who has to live with your decision. It’s a hard decision, I know, considering your work issues.Good luck,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
