I'm having my 3rd BCG instillation tomorrow. With my first instillation, the nurse really trashed my urethra, and it was very painful to urinate for a few days. On my 2nd BCG, I requested lidocane, and there was huge difference - Much better. I'll bet your bleeding was from the catheter.
Regarding bladder pain or reaction from the BCG, I'm really monitoring this experience, and so far, it seems that I'm getting decreased bladder capacity and some burning at the end of urination on the 4th day after the instillation. There's really no pain on the day I get BCG, or on the day after. I'm not sure if this pain and swelling on the 4th day is coincidental for these last two treatments, or if it can be tied to the treatment. I'll post my findings as I move through this. So far, for me, it's been more tolerable than I expected.
Finished BCG installation # 6 today. No side effects except for some burning for a few hours. Now I have to wait until February for a scope and cytology test to see if the treatments were effective. I'm hoping and praying that they work.
I did ask the nurse why I would pass blood after the first installation but none of the other ones and she suggested that it was probably from the insertion of the catheter and not the BCG.
I was also searching online to see how long your immune cells work at attacking the abnormal cells with BCG. I was trying to see if your immune cells only went after the bad cells while the BCG was in the bladder of if there is a lasting effect for hours, days or even weeks. But I couldn't find any definite answers.
I completed number 5 of 6 BCG treatments today. So far so good. I did notice a few days after treatment #4 I had some minor flu like symptoms for a day. I’m chalking that up to BCG. We’ll see if it happens again later in the week.
I did ask the nurse about using lidocaine prior to the catheter and she told me that is standard procedure with BCG.
I also asked the nurse why I would have blood and other particles coming out after my first BCG treatment. But then no blood, just normal looking urine for all the other ones. She wasn’t sure but suggested I could have had some lingering trauma from the cystoscopy I had a few days prior to the first BCG treatment. I was hoping the first treatment got rid of all the abnormal cells and the rest of the treatments were just scouting around and doing clean up
My problem after having near 40 instillations is if I stand up to leave I void..... no stopping that fact. So lay on table and nap & read Bible. On the Lidocaine I have ask my doctors to not use it due to mess and fact it worsens the retention issues with me and they are adamant about using it.... for ease of catheter insertion. Truth is I'm such an old hand at doing this that catheter doesn't bother me much at all anymore. Also they tend to insert the cath immediately after lidocaine which makes no sense to me.... least give couple minutes to numb a bit? Just an added mess to me that prefer not have.
Thanks for the link to the NCBI study. I read the report. One item noted that I found curious was they recommended not using lidocaine for the administration of BCG. I'm going to a National Cancer Center for my infusion of BCG and they use lidocaine prior to the catheter insertion. Not sure if it is a different variety of lidocaine or if the center deems the lidocaine has a insignificant impact on the BCG. I will ask the nurse next week.
I have noticed that many hospitals are not requiring the rolling anymore according to several patients' comments.
It is likely because the consensus among a medical community stated "when considering other practical issues for BCG administration, the Task Force determined that it is not necessary to rotate patients every 15 min post BCG instillation". See the section What are the most important practical aspects of administration of BCG? www.ncbi.nlm.nih.gov/pmc/articles/PMC5557323/
"An interesting practice among some urologists is to have patients lie recumbent during the instillation period and to have them rotate every15 minutes in an attempt to evenly expose the entire bladder surface to BCG. Although well intentioned, this rotisserie method does not seem to have any basis in the scientific literature. The elastic nature of the compliant bladder suggests that it changes size to accommodate the volume of fluid inside. Therefore, unless the instillation was incorrectly done and a large air pocket was introduced in the bladder, serial turning of the patient is not necessary. It is the authors’ practice to have patients lie recumbent for several minutes
after instillation of the BCG and then to allow them to ambulate normally during the 2-hour retention period."
Still, it would not hurt to rotate just in case there is a large air pocket as it could be the case. But, the consensus by urologists says we do not have to worry much on rotating.