Bladder Cancer Group: Introduce yourself and connect with others

Like to know what people think of not doing chemo for bladder cancer an do you know what the life is without treatment. I have now a 10 cc in my bladder

I’m an 85 year old man, in good general health with a T1 high grade urothelial tumor with possible plasmacytoid features. Not muscle invasive, and Dr Tyson gave me a choice of BCG or cystectomy. For me, since catheterization is painful and cystoscopy is more painful I chose cystectomy. It is more definitive, and I won’t need to be looking at an endless series of treatments and possible eventual cystectomy. Always interested in more info.

@sbassmeister, there are a few members who have both prostate cancer and bladder cancer. You may be wish to ask your questions here:
- Prostate cancer AND bladder cancer - any others with both?https://connect.mayoclinic.org/discussion/prostate-cancer-and-bladder-cancer-any-others-with-both/

All the best with the biopsy this month.

@colleenyoung
It was clear. I have 3 more BCG treatments in late May and early June. Another scope in September and if it’s clear then I’m through with BCG treatments.

@rwells50, how did your scope go?

@rafcer
The catheter is inserted first and that’s where the discomfort occurs. The BCG is then put in through the catheter and there is no discomfort there. It’s been almost 4 years since my surgery. I don’t remember if bladder urges continued once the catheter was removed. I was told about using the bleach but not anything about getting it on my clothes, and to my knowledge I never got any on my clothes. I really only experienced about one day of issues after each treatment and then things were pretty normal until the next treatment.

@rwells50 In regards to the catheter did you mean just when the dr inserted the BCG into bladder? My bladder urges started after TURBT surgery when I was sent home with catheter for 10 days. Bladder urges still continue as of now. How long does BCG stay in your urine since I was told about using one bathroom,using bleach in toilet bowl so nobody gets contaminated. What were you told regarding if BCG gets on clothing? You can tell I’m doubtful because Dr just gave me pamphlet on BCG. I’m so thankful for this group!

@rafcer
I’ve had many catheters and my experience has been frequent urine urges for at least 24 hours after each one. My immediate concern, after the doctor explained how the BCG treatments were going to work, was all the catheters that would be required. She said that I would get used to them. I can’t say that I ever got used to them but after a while I did get where I knew what to expect. The secret to them really is to relax, as hard as that is to do. The only side effect I had from the treatments was burning for the first few urinations after the treatment. As I said above the frequent urine urges would continue through the night. I did not have any diet changes. You can get through it. Hope this helped.

@rwells50 You have been through many tests ! Hope all is going well for you. I was diagnosed high grade BC Jan 9th, so far had TURBT surgery Jan29th. Second surgery March 10th. Then BCG treatments. Since catheter was removed 10 days post surgery I have been in diapers with frequent urine urges. Middle of night especially. Have you experienced this? Since you have had a series of BCG how did you manage them, please share any helpful tips. Have you had any reactions to them, have you changed you diet? You can tell I’m not looking forward to this adventure….

@colleenyoung
Yes you have that right. I started the first two years with scopes every three months. The last year they have been every 6 months, so about 10 over the 3 years. My next one is March 2nd.