BCG treatment starts a week from today

My first BCG treatment experience was 7 years ago and was caught early due to blood in my urine that was due to a 25 mile bike ride.
The high grade tumor was removed and yes the catheter was the worst part. I went through bcg treatments at full dose. Cystoscopy were 3 month, 6 months and then 1 year for the last 2 years. However, this April, tumor came back. Again tumor was removed, catheter was only for 1 day and still worst part. I have completed 6 initial BCG treatments and 3 maintenance treatments all at half dose due to bcg shortage. This was a blessing as my body was able to better tolerate this. I have 3 more maintenance treatments after scope in November. Praying it comes back clean.
As for BCG, everyone is going to react differently. The 1st 6 were not bad, just a little bit sore but always felt like I had to pee. The last 3 were more difficult but I can’t say enough to take AZO right after the treatments. They are a life saver but will turn your urine orange.
Good luck with your treatments.

@tom26 Thank you!

Well I’ve had to reschedule my first treatment until Nov.5th due to my mother passing away Oct. 20th. It was somewhat unexpected until over the weekend but I and my family were able to be with her when it happened. I’m still in a blur. I’m worried that I’m going to be in a pretty bad state of mind by the time Nov. 5th gets here. But i also know she would not want me to delay it any longer if possible. I so appreciate everyone’s advice and shared experiences. In the short time since I joined I have learned a lot. Still wishing you all the best and again thank you!

I went through the 6 treatments in June and July. No problems with the treatments. I had to have 3 surgeries to remove everything and cauterize. I was under anesthesia for all 3 surgeries.

Not sure about your doctor's office but I was in the waiting room longer than what the procedure took.
At least for me, they numbed you down there (no general anesthesia) before inserting the tube and injecting the BCG. I was allowed to go home after the procedure but I had to hold in the BCG for at least 3 hours. Took a bit of doing but I did it for all 6 treatments. I am about to start my follow-up 3 BCG treatments. this is being done just as a cautionary and standard treatment.

The big problem- you are naked to world to see. A bit embarrassing but you will get used to it.

@gkarsin, how did the cystoscopy go? Any update on the results of your biopsy and what happens now?

@colleenyoung yes. Not muscle invaded. My doctor gave me three choices:
1. Do nothing now and look at it in three months
2. Have BCG instillations in six weeks weekly for six weeks
3. Haven’t bladder removed
I chose #2 which was also his recommendation

@colleenyoung
I had my second cystoscopy last Thursday to take a muscle biopsy. It showed no cancer so now after it heals up in six weeks I will have the BCG instillments every week of six weeks. I am not looking forward to the catheter without anaesthesia as having my catheter removed was difficult so I will ask my primary doc for something to take to relax or sedate me.

@gkarsin
I've done 3 of my 6 BCG installations thus far. Number 4 is scheduled for next Tuesday. Agree that the catheter insertion is probably the worst part, but manageable. They do deaden the tip so the initial insertion isn't that bad, but you then do feel the tube going in the rest of the way. However once that part is completed, the rest is cake. My concern is that if they gave me something to "relax or sedate", then they wouldn't let me leave immediately to return home. (FYI, the first time you must stay 2 hours regardless). So I'd recommend that if the catheter insertion is the worst part of our cancer story, great; just tough it out for the brief insertion moments!

@jlp27
Thank you for posting this as I am having my first BCG instillation in a few weeks and my main worry is the catheter insertion. I plan on taking something to relax me so my wife will drive me home.

I had BCG treatments after 2 TURBT for non-invasive tumors. I was required to roll from one side to the next every 15 minutes to be sure all sides of my bladder was coated. The only discomfort I had was when I urinated the BCG out of my bladder. Lots of burning and feeling like I needed to go some more every few seconds. I learned to take a Tylenol and a dose of pyridium after urinating. After 6 treatments, the burning was somewhat worse, but tolerable. The insertion of the catheter was not a big deal except for the exposure, if you know what I mean. I had 6 treatments but still had growth. Because I had bronchospasms after surgeries, my urologist agreed to remove tumors in the office which was much better for me. A numbing agent was put into my bladder prior to the removals by laser, and I did not experience more than a pinching feeling inside my bladder. I had two more sets of 3 BCG treatments after cystoscopies every 3 months. I was a little more tired than usual, but did not bleed except immediately after the removals. After those treatments, I was clear at 3 then 6 months. It has been a year since my last cystoscopy. I go this month to see if I am still clear. I pray I am, but if a person has to have cancer, so far this has not been as bad as so many have suffered through. I think about it every time I urinate. But I am thankful that it has not interfered with my ability to enjoy life. I hope your experience is ok and that the treatments are successful!