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.

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.

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 🤗

@talltxlady Really hope it went well for you yesterday.

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 😊

Hi, I'm 79 years old, living in Georgetown, Texas. I was diagnosed with bladder cancer around 11/2024. I had 3 tumors that were high risk but non-muscle invasive. They were cut out and my urology group put me into a 24 month FDA trial treatment program. I've had a bunch of BCG treatments (2 remaining) as well as a year of immuno-therapy drip. While all my cryoscopies have been negative my problem has been that (1) I am totally incontinent and, (2) have to urinate about every couple of minutes (24/7) ever since they operated on me in 12/2024. As a result, I have not been able to sleep at night for around 18 months. My treatment doctor does not give me a lot of hope that I will outgrow the incontinence/constant urination once my treatment program is over. Thus, I have met with a surgeon that specializes in ileal conduit surgery and am considering this surgical option. While I recognize that having to wear the pouch would bring its own problems, I'm really ready to end my totally intrusive incontinence. Has anyone recently faced a similar problem?? I'm looking for advice and input.

I am Mike, after a cystoscopy turbt for a stage 3 invasive bladder wall tumour in September 2024 a course of chemo followed. August 25 had another tumour removed followed by a course of 20 doses of radio therapy. January 26 a further cystoscopy revealed a small tumour non invasive .Now on a BCG course started April.