Bladder Cancer Group: Introduce yourself and connect with others

Thank you so much @kevinpm . Of all things I mixed the date of my appointment up! It's today. I'll update y'all later when I return this after. Tysm for your comment 😊

@talltxlady Really hope it went well for you yesterday.

Have my cystoscopy later this afternoon. I'm exactly 4.5 years out, have always come back clean (even though my diagnosis was the aggressive type). I wonder if he will put me on annual checks now, instead of semi-annual? I will find out in about 5 hours 🤗

Hello, I am a 75-year-old male, living in the central Florida (Tampa/St. Pete) area. I've been in bladder cancer treatment for about 3-1/2 years. I originally had no issues or symptoms, but on the advise of a Primary Care MD went to a Urologist to be "checked-out" due to my age. A cystoscopy revealed two small tumors (3-mm) that were removed via TURBT and came back graded Ta, low grade. Two and 1/2 years later a routine cysto revealed a very small tumor, removed in office via fulguration. That tumor was graded Tis/CIS, fast growing. I transferred treatment to Moffitt Cancer Center where I was immediately scheduled for 6 BCG infusions. Those were considered successful and I received another set of 3 three months later. Side effects on the 6 were negligible but side effects on the following 3 were pretty unpleasant. Also, my normal-size prostrate became very enlarged after the first 6, requiring medication to allow normal urine flow and required the use of alternate catheters. Keeping my fingers crossed. This 3-month rest leads to a follow-up cysto in four weeks. I like to be as informed as possible, so I am happy that I found you all on line.

@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.

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

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.

@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.

@sepdvm
Thank you very much for this encouraging reply.
May I ask what were your husband‘s l treatments to be cancer free now.
I am in Chapel Hill at the Lineberger Cancer at UNC. Where would I potentially go for a second opinion?

Hello @hummelb99. Sorry that you need to be a part of this group. My husband has been on this bladder cancer journey for 6 years. His urothelial cell carcinoma was highly aggressive and muscle invasive so it kept recurring. He was a BCG failure, Keytruda failure, but did not have the options available even now so chose surgery with bladder removal and neobladder. He is cancer free now. You will have more treatment options with non muscle invasive tumor, but the darn things like to keep coming back. You have been through a lot already. Just know that it never hurts to ask for a referral for a second opinion at a larger cancer center, if needed. Be strong. You can get through this.