Bladder Cancer Group: Introduce yourself and connect with others

@hummelb99 it sounds like you are already with a top level medical Center. The surgery to remove bladder, prostate, and form a neobladder from his ileum is what provided a cure for my husband. We were told from the beginning that was the most effective cure, but of course no one wants to plan to have their bladder removed. So initially a partial cystectomy to remove the tumor which was isolated in a pouch off the bladder, Gemcitabine infused into bladder postop, Cisplatin chemotherapy, BCG, Keytruda, and multiple TURBTS were done with a recurrence every 4-6 months. After a couple of years of this, He just wanted to pursue a cure with the best odds. That meant removing his bladder. He chose to have a neobladder and had many complications for 2 years afterward. It is certainly a major surgery. Now he must self catheterize 3-4 times daily but he is cancer free. He is content with his decision.
The drug combination you are having was not offered to him at the time at Mayo Clinic. You can have the discussion with your oncologist now, during treatment ,as to what would be your best option for a cure should this treatment not work. Perhaps control is all that can be achieved, which is where I am with my head and neck cancer. But this new normal for me is still a very good life. At age 72, I hope to continue for many years.

I am feeling a little frustrated with the whole BCG shortage. My first round of BCG was delayed a couple of months until a resupply came in. I had some more cancer removed from my bladder 7 weeks after my final BCG infusion (is that the right word?) and my urologist ordered another round of BCG ASAP. It has been 2 weeks, and I found out today that I am on the waiting list until they get another supply of BCG. The urologist said that BCG is the "gold standard" for bladder cancer care. It is really not, if they don't have the BCG to provide. I asked about Gem/Doce but he said it wasn't available locally. I may have to drive a bit to go to a large cancer center in Chicago or maybe go to Mayo in Rochester to get treatment (6 hours away). I am trying to weigh the options of waiting for BCG here or finding it or Gem/Doce available but a long drive away.

Hi. I live in Chicago and am part of the Endeavor network of 7 Hospitals (Northshore University Health System). I was scheduled for BCG and I was lucky I asked ahead of time if they do it the same way as Mayo. That's when they disclosed that there is a Nationwide shortage of BCG so they were only giving a half dosage of BCG to patients. I contacted Mayo and was told that this is not recommended and to come up there for treatment (BCG instillation). Can you believe that? A hospital system that commands 7 hospitals can't get full dosages of BCG! Run from Endeavor. Get treatment at Mayo. Five-hour drive one way for me. My first round of BCG failed so I'm on my second round of BCG. God bless you. Hope you get positive results

@lrb67 it sounds like another opinion is a good decision. My husband was determined to be a BCG failure at Mayo after his cancer returned during maintenance BCG treatment. I'm not sure why urologists continue with prescribing BCG when it is not readily available and patients have recurring disease shortly after/during treatment. You can't go wrong with Mayo Rochester.