BCG question
I am being treated with BCG for my NMIBC Ta-T1, an approach I tried to learn about from my surgeon and through my own research. Two different nurses have done my installations, four to date, and I noticed something that concerned me. The amount of sterile solution that contained the BCG was quite different depending on the nurse, either 50ml, or 2-3 times that amount. That amount seems relevant as BCG is dissolved in solution and the standard is 50ml. When I asked about it, the nurse today said it didn't matter. Really? I telephoned Merck and spoke at length to a representative who carefully explained that there is a distinct procedure for preparing the product, and that she couldn't speak to my particular caregiver and her protocol, but she suggested this: Merck will send her a letter indicating my concerns about how the product is being administered. I am now worried that I may have received a diluted dose which hasn't been effective and has been a waste of time and product. This is one more thing I am anxious about. My surgeon is out of office until next week; can anyone suggest anything else I can do?
that is an added concern you don’t need. You did the right thing to question it. Hopefully you get more answers soon. Thinking of you. Laura, Moderator, BladderCancer.net 
@laurelg - I have not had BCG and do read on occasion that due to the ongoing shortage some patients are administered less than full dosages. I have a couple suggestions - first - I would send a message to your doctor asking about this and explaining your concern. Secondly, I would ask for detailed office notes that I would assume would have the information in there about the what where, how etc. Hope that this helps out and that your treatments are successful. My best to you. Linda Urbanski (moderator, Bladdercancer.net team member)
Linda, that's a great suggestion, to see the documentation of the installations! I'm hoping my doctor calls me re/the letter she was sent from Merck, but if I don't hear from her, I'll reach out before my next treatment. Thank you for helpful ideas!
Hi Laurel,
Thank you for sharing this. I think it is criminal that medical professionals get away with using wording on a document to quash their responsibility in the matter of a patient's healthcare. The fact that the paperwork says one thing, but you SAW another, would make me absolutely LIVID. I would be making a scene and looking for another doctor's office. I would also mention to other staff members what you experienced. It's so unfair that people we entrust with our lives are given "Get Out Of Jail Free" cards all the time. Yet let you or I do so much as drive a bit too fast, jay-walk, or underpay taxes, things that don't directly effect other's lives, and we pay for it!! Brava for sharing your story. Keep it up! Sending you all my best, Charles (Moderator / BladderCancer.net)
Linda. I regularly use the patient portal for my PCP but the portal for my urology group has been inaccessible since January, very frustrating. I plan to call the office today and request to speak with my urologist before my next BCG installation. If I don't hear back, I may go in person as it's not far from my home. Thanks again.
@laurelg - Another thought that I just had - I know that a couple years my doctors moved to another group and changed who managed their patient portal so I had to log to a different site. I would think if this was the case you would have been advised but just thought I would put that out there as the beginning of the year seem like the most likely time for such a change. My best Linda Urbanski ( moderator, Bladdercancer.net team member)
@laurelg - I hope they can respond over the phone so you can avoid the trip but we all know how it is sometimes difficult to reach a person versus voicemail. You may also be able to find out why their portal seems to not be accessible. Good luck and hope you have answers soon. Linda Urbanski ( moderator, Bladdercancer.net team member)
