Bladder Cancer: High grade

I was diagnosed on Valentine’s Day 2023. Urothelial Cancer, 6cm tumor in my left kidney none in my bladder and non showing anywhere else and no symptoms. Incidental finding with MRI for something else. Left kidney and ureter were removed. Four months later I had tumors in my bladder. Ongoing battle for two years, I had BCG for six wks. with bladder tumors afterward. Two combined intravescular chemos for 6 wks. No tumors afterward. Went to having chemo once a month. Four months later no bladder tumors in the bladder but found one outside the bladder. I am about to have another PET to see if it is anywhere else. Anyone else have anything similar?

No painful urination. Amu45sin

Had burning, but notosinful urination. Best to your husband!

Thank you for your reply. I have a feeling my husband won’t be able to hold it for more than an hour either.
Did you have any burning and painful urination.?

amu45sin here.
Had 6 BCG treatments after removal of a papillary tumor.
No complications from the BCG, other than that I could only hold it in for about an hour, and not the full 2 hours. Maybe that is why a sesille flat tumor has now appeared in the same area as the papillary tumor.
Cleanup after the treatment at home was easier than I thought.

@jimg56, I'm sure the hospital will give you and your husband instructions on how to be safe and keep others safe while on Bacillus Calmette-Guérin (BCG) treatment. Because BCG contains live (but weakened) bacteria, precautions are necessary to prevent it from being passed to others.
- Sit when urinating
- Wash hands thoroughly after urination
- Avoid sexual contact for 24 hours
- While you are being treated with BCG, and for 6 to 12 weeks after you stop treatment with it, avoid contact with people who have tuberculosis.

Your team will also review any medications your husband is taking to make sure there are no medication interactions.

When will he start treatment?

It is perfectly safe. There is a risk of side effects. Usually mild. Sometimes severe. But the alternative of not treating is worse. An alternative could be DOCE/GEM localized chemotherapy or brand new Cretostimogene. The hypothetical risk to others is that they could be attract TB through BCG. BCG is basically the TB virus.
https://www.ncbi.nlm.nih.gov/books/NBK562300/#:~:text=Miliary%20TB%20occurs%20when%20the,tubercular%20lesions%20in%20affected%20organs.
https://cgoncology.com/science
Unfortunately, in medicine, there is alway risk. 1% of RC surgeries end up in fatality. A similar percentage of people that get nivolumab pass. Such is life.

So after the may 12th
Consult the dr now wants to use 6 weeks of bcg treatments on my husband. There was a tumor at the neck of the bladder that he removed.
My husband is wondering if bcg is so dangerous to other people that he has to be careful cleaning up after urination for 6 hours then how can it be safe for him? Any answers sincerely appreciated. I hope this makes sense.

I'm tagging @rogerferr so that he sees your question.

@mgb007, are you considering a neo bladder?

Hi Roger, did you have the neo bladder constructed internally or do you have the attached to you side?