Has anyone not had any treatment after non-invasive tumor removed?

Hi @rafcer
I have already had 3 BCG treatments and I did not find these painful in any way.

I dealt with keeping this installation in my bladder for 2 hours by neither eating nor drinking the night before. (If I had eaten, I would become extremely thirsty and wanted to avoid this) Although I was told you should not eat or drink 4 hours prior to having the BCG, I found prolonging this time worked better for me.

I was also instructed to turn every 15 minutes on each of the 4 sides, thereby giving the BCG an opportunity to coat each part of my bladder. As a diversionary tactic you may want to listen to some music or watch tv for those two hours. During each of the three times, fortunately I was able to maintain it.

On the issue of what to do when urinating for the next 6 hours, the instruction sheet I was given stated:
. Men/women should sit on the toilet seat to urinate.
. Immediately after urinating, add 2 cups of undiluted bleach to the toilet and closed the lid.
. Let bleach stand for 15 minutes before flushing to disinfect the toilet.
. Drink plenty of water to flush any remaining BCG bacteria out of your bladder.

Of course, each person reacts differently to this instillation and I was nervous. I think it is only natural to become apprehensive but once we become familiar with something, we find it was not warranted.

I wish you success with this BCG treatment.

Hi again @rafcer
By the way, I turned 80 this past summer.

We have only one bathroom and since I was urinating so often (it seemed constant when drinking large amounts of water) during the six-hour period and did not want to inhale constant fumes from clorox and/or Lysol needed to sanitize, I purchased from Amazon the item listed below. I did, of course, wash my hands thoroughly each time after urinating (I am a clean freak).

Urinals for Men Glow in The Dark Lid by Tilcare (1 Pack) - 32oz/1000mL Thick Plastic Mens Bedpan Bottle with Screw-on Lid - Spill Proof Portable Pee Bottles - Travel Urine Collection Containers.

I then instructed my husband when he needed to urinate during these 6 hours (time which bacteria could be transmitted) to merely sit on the tub ledge and urinate into the bottle, then cap it up and leave it in the tub and told him not to approach toilet or sink. Afterward I gave him as many wet gentle wipes, soap and water and paper toweling as needed.

When 7 or 8 hours had passed, I then completely disinfected the toilet and sink and everything was back to normal.

It is far easier with separate bathrooms but we do what we must to ensure safety.

I hope there is no confusion about what I wrote.

Best wishes and I hope this helps.

@deidre77 Thank you so much for the detailed response. You have given me some ideas on how to make this journey better.
Thank you and yes it helps a lot.

@michzn that does sound odd to me. Did you question him? After I complete the once a month treatments - six more to go, he does a scope, and if bladder is still clean, I will have a cystoscope once a year.
Keep me posted. 💜

May I ask what age range you are in. I am 69, Dr highly recommended treatment. His words at least do the six weeks. If my Dr said to me, do it or don’t do it, It would have pissed me off. They are the experts and I am sitting in the unknown territory

@linda0234 Yes, I questioned that decision and was met with, we have removed all the tumors and instilled gemcitibine. I am trying now to get a second opinion, which has proved extremely difficult. All the providers want to see me in person and nearly 2 months out from now. I can’t have a cystoscopy now, so I have no idea what the point would be. I am still calling around for more options.

@dianeoh26 I am 67. I was not offered a choice at all. Everything I have read says with HG NMI it’s straight to immunotherapy. I am now seeking a second opinion.

@michzn that is very strange. Have you tried calling Cleveland Clinic or Ohio State University James Cancer Center? Both always advertise contacting them if you need a second opinion.

The other suggestion is Indiana University Medical Center in Indianapolis, oncology department. My daughter is being treated there for her colon cancer and liver METs. I am impressed with their oncology dept. as well.

Did you say you live close to any of these medical centers.
Why aren’t you able to have a cystoscope.