Recent diagnosis of early stage T1 NIMBC: Any tips?

I hear you. 73 years old. Had one TURBT locally. NMIBC TA stage. Sought out Mayo. Had TURBT, then BCG and then another TURBT. Scheduled for another 6 week round of BCG. I tolerated BCG well the first round and hoping the same for the next. BCG is just about 90 seconds of minor discomfort with catheter and formula instilling. I think less than 10% have a problem with the BCG and of those many have had chemo prior. If you’re at Mayo I believe it is the best place. My local urologist wanted to give me only half the dosage of BCG because of what they said was a nationwide shortage. I messaged Mayo and they advised to come there for BCG as they had no shortage. Go with Mayo.

Last year I completed two, six-week immunotherapy treatments with BCG. Because I'm incontinent I had to remain on a padded table for 90 minutes each time. The table was comfortable and the staff supplied pillows and other amenities to help keep me comfortable. I brought along my iPhone and listened to music or podcasts. The only side effect I experienced was mild fatigue, but it didn't keep me off the golf course (I'm 65 and we do use carts). Insertion and removal of the catheter are nothing to worry about. Minimum discomfort for about ten seconds each time. The folks at Mayo are kind, caring, careful, capable and friendly. If you are not incontinent you'll be allowed to leave after injection of the BCG and instructed to expel it later. BCG is not my favorite form of recreation, but it's nothing to be anxious about. Best wishes for success.

Anyone with BCG treatments other than at Mayo? I’d really be interested in hearing about that.

@dks2500 My husband had his BCG at a local cancer center, under the direction of his Mayo urologist. We live 10 hours away from Rochester. He had no issues with the treatment other then a short lived increase in frequency of urination for 24 hours. The catheterization was smoother when the nurse infused lidocaine gel initially. At the time there was rumor of shortages but it was always available at this treatment center. Unfortunately he had a relapse during the maintenance phase of his BCG treatment so was considered a BCG failure. With a highly aggressive cancer, he did end up with radical cystectomy/neobladder but is cancer free.

@sepdvm thank you! Isn’t there a way to determine whether BCG will work for you before you try it?

@dks2500 We were not told of this possibility at Mayo Clinic where my husband had his initial diagnosis and surgery. Perhaps this testing is newer or just not widely accepted yet? I had not heard of it. But then when my husband went onto Keytruda, I asked the urologist about tumor testing for p51 levels to see if that therapy had good odds of working, and he said they "Don't do that". It was strange because I had just had tumor testing for my SCC starting Libtayo which works on the same pathway as Keytruda, but he blew it off. Perhaps the difference in having a urologist manage cancer treatment vs an oncologist manage care?

@sepdvm very interesting. Thank you very much. It seems that the treatment of bladder cancer is somewhat in a state of flux.

@dks2500 Hi. BCG has been used for 40 years and they call it the gold standard. My first urologist (local) tested me for biomarkers that would cause failure. That test showed only a 40% chance of success. The local urologist said they were still going to start treatment with BCG. I had TURBT recently at Mayo and the surgeon told me that not enough research has been done on biomarkers to validate that testing. Good luck. Hope this info helps you.

@kevinpm thanks for this. There seems to be differing opinions among the oncologists on this, from what I’ve read. Interesting.

@dks2500 I’m being treated at another major medical center, UT Southwestern in Dallas. My doctor has two trials underway asking just that question: how to tell if you will respond. One is using high resolution images of tumors, then following patients for a few years to see if A.I. can predict which will respond and which will not. (To the human eye they all look the same.) The other is using fluid obtained during cystoscopies (sorry - “backwash” for lack of a better term) to ask the same question. My doctor says that right now there is no way to predict, so that’s what he and others are working on.