BCG treatment done, but cystoscopy found new tumor: What next?

@colleenyoung I had the first set of BCG treatments once a week for 6 weeks, a month off followed by a cysco, then once a week for 3 weeks. Now I am set for the last cysco and the once a month BCG for a year. Doing great concentrating on looking both ways before I cross the street.

Similarly, I was refractory after 6 BCG treatments (i.e. CIS tumor returned) for NMIBC. We went to Vanderbilt for another TURBT and blue-light cystoscopy. My VUMC urologist (contact me for info) prescribed Adstiladrin in lieu of cystectomy. After 4 quarterly instillations, cystoscopies indicate bladder is clear of cancer. Just completed fifth treatment (maintenance) with only minor side effects as I continue the healing journey. Have faith and consider/pray about innovative treatment options (Anktiva, Adstiladrin, Gem/Dox, etc). Blessings!

Please don't panic! I had 6 weeks then 3 then 3 more of BCG treatments with tumors found and removed in another surgery and 2x in the office. Today I had my 1 year cystoscopy after 3 and 6 month cystoscopies following my last BCG treatment, each with no tumors found!! I am praising God! I stopped consuming artificial sweetness, changed to plant based supplements, and have tried to cook using more organic ingredients. I haven't smoked in 40 years and have a glass of wine or a cocktail maybe 1 or 2x a month ( sometimes none at all). I used to use roundup when doing yardwork, but no more. I also drink a lot of water. I am trying to control the things I can and leave the rest to God. Meditation and mindfulness activities have helped me let my worries go the best I can. It's hard when everytime I urinate I think about it. The bottom line is that despite multiple surgeries/removals and BCG treatments, I am at present cancer free! It can happen for you, too! We are all different, but there is definitely hope for you! Believe!

@sepdvm
My husband is in similar situation. Three years ago we started at Mayo in Rochester because we weren’t getting a diagnosis here. In hindsight, the blood in his urine was the moment to run to a good institution lije Mayo. We found a facility near us to administer BCG. After two rounds it failed. That facility could not do the gem/doc that Mayo advised, so we found that a Urologist at KU med center would, so we switched. The gem/ doc seems to have worked for high grade tumors, but at three years( 5 TURBTs), with a removal of low grade tumors, Dr is not continuing treatment- monitoring only. He’s having a cysto 12/23 and hopefully he’s clear. My husband is tired of treatment so the monitoring only has been wonderful. Hopefully Thats will continue. TURBTs are pretty disruptive and require healing time and difficulty with bladder control, right?
It seems like both at MAYO and KU, the first thing they recommend is totally removal, but they listen and understand it’s not what we want. Not yet.

There is some risk in not treating, especially with a prior history of high grade malignancy. They may recur. And once they do they can rapidly grow and potentially result in PT2 or worse, N+ and even LVI. Having to do a RC or undergo severe treatments like systemic chemo or ICI is far more inconvenient than TURBTs.

@ljashton interesting, I went directly to KU Med after St Lukes South found the tumor. If all goes well I think their plan after the 12 months at once a month is to just monitor. I will ask about the gem/ doc. on my visit for cysto on 12/10.