Followup for Noninvasive High-Grade: Anyone chosen no more treatment?

At 85, headed for more BCG in 01/26. This will be series 5
(3 weekly treatments). Each of the several cystoscopy exams seem to be clear, but 2 more treatments and cystoscopies
to go. I, personally have had no major complications or pain with the process - just discomfort. My bladder does send me fake "pee signals", but this is a minor annoyance. I hope that you have success.

I'm 75 and completed the 6th BCG instillation on November 18th, (one week off between 1st & 2nd instillation). I had slight burning upon urination the day of rounds 1 & 2, headaches the nights of 1 & 2, chills 4 out of the 6 rounds during the day of, and one tiny blood clot seen the day of the 6th round. Given the side effects I've been reading from others on this site, mine were minimal, with the most uncomfortable thing being the catheter insertion. The original cystoscopy/TURBT showed a T1 high-grade papillary urothelial carcinoma (8/19). The resection cystoscopy/TURBT on 9/8 showed no additional cancer. Today (12/16) I had my followup cystoscopy to check the bladder. Although I have yet to receive followup test results of my urine for the presence of cancer cells, my doctor pronounced the bladder to be NED. I'm now scheduled to enter BCG maintenance, with the first 3 instillations scheduled for 1/13, 1/29, and 2/11. The next cystoscopy is scheduled for 3/31. I consider myself fortunate and grateful during this holiday season. For what it's worth: I was determined to do anything under my control that might conceivably assist in a positive result. We will never know for sure if any of the following actions on my part had any beneficial interaction on my outcome-to-date, but from the first cystoscopy until December 4th: I stopped all alcohol, I improved my diet, I lost 10 pounds, I walked 2.6 miles plus briskly 4 times per week, I did strength training 2 times per week, I obtained the COVID mRNA vaccine, and I fasted 1 to 2 days per week. Good luck and best wishes on your respective journeys.

For me at age 74, I have several big questions for my doctor. How bad is the cancer? Will surgery and treatments work well enough so I can expect no recurrence. With my other health problems will that effect the recovery period. If I get good answers to these questions I probably would do the surgery and treatments, AND I would get at least 1 more doctor's opinion. I did not have any major problems with my surgeries (3) and 2 sets of BCG treatments.

If the prognosis was not good I would seriously maybe not do the surgeries and treatments. I have seen to many family and friends die a slow and painful death when there was not much hope of survival.

I'm 72 with the same condition. I'm using BCG. It was highly effective and now I'm doing maintenance doses. Plus there are many new drugs in the pipeline.

At 62,...Bladder Cancer Treatment starts Next Week...and The Catheter issue to Deliver the BCG MEDICATION....is my Problem...
3 Surgeries All Done through my Penis,...Now, the Bladder Cancer Maintence Treatment Starts through my Penis....Again...My Penis is Really taking a Hit,..Now, 6 more Treatments,
Once a Week and Delivery through my Penis....Isnt there another Way to Take this Treatment....This Whole Catheter thing is Very Distressing for Me....My Anxiety is through the Roof, Yes, My Doctor Suggested taking a Valium before this Treatment....WHY DO I HAVE TO BE AWAKE FOR THIS TREATMENT....I Don't Know What to do Here....Can You offer Me another Choice....Thank You,
Todd

@allenshirl I think bleeding and passing clots is a normal after BCG treatments. It hasn't lasted longer than a day at most for me and not every time. The treatments do have a tendency to get more uncomfortable for each one in a series.

@peter51f it’s like this. Life is about choices. Talk to the people you would be doing it for and get their feedback. Are they being selfish or are you? We all have faced the same question and back you no matter what you decide. I personally watched cancer take my mom in less than a month earlier this year. I was with my baby sister as she passed after fighting cancer for years. And I was with my father who had cancer pain but did nothing for about a year before he died. My path is to fight my bladder cancer. My reasons are few but this is my story and I will decide when it ends not cancer. Good luck to you.

@84yosk8r Love the positivity! happy New Year!

@jlp27 my history is very similar to yours, except I’m 80. In the midst of my third maintenance BCG treatment series. I was determined too to do everything I can to prevent a reoccurrence except that my side effects care more substantial. It takes two to three days for me to recover from frequent urgent urinations and I get flu like symptoms and lethargy. Recover well before my next weekly treatment but it’s not pleasant. My doc agreed to lower dose to 1/3 normal treatment to see if it helps with the side effects. After next week I will have had 12 treatments with three clear cystoscopes. I might call it quits after this series and opt for regular cystoscopes. Also it appears that multi parameter MRIs might be as good or better than cystoscopy for detecting reoccurrence.

@quahog I'm not sure what a "normal" dose is for BCG but all of my first six were 1/3 BCG doses. These are considered to be normal and acceptable under certain clinical conditions from what I understand. Perhaps this is why my reaction to BCG has been much less severe than other stories on this site. I'm OK with everything thus far in my journey. If your reaction to the 1/3 doses is better, perhaps that might encourage you to continue with BCG. In either case, best wishes for a successful outcome.