My journey with Bacillus Calmette-Guerin (BCG) treatment

I'm a 75 year old male. My journey started with hematuria for about 10 days in April. Thinking it to be an anomaly, I waited until my annual physical in early July to mention it to my PCP. She immediately ordered a urological CT scan where a mass the size of a golf ball was seen in my bladder. I was scheduled for a cystoscopy & TURBT August 19th, where my urologist thought it to be a benign tumor. It turned out to be a T1 non-invasive high-grade papillary urothelial carcinoma. A second cystoscopy & TURBT was scheduled for September 8th. No further cancer was found and the non-invasive nature was confirmed. I'm now scheduled to start 30% BCG immunotherapy treatment on October 21st, with a followup cystoscopy to check on results December 30th. All of your stories and experiences have been somewhat reassuring as I start on this uncertain path and future

@ggarrepy
I couldn't hold my BCG Treatment for 2 hrs , Felt like Bursting .,

I'm a 75 yr old male. My journey started in 2019 with melanoma cancer, skin cancer and lung cancer which all have been cured. But now I've got cancer of the bladder, finished BCG treatments after 6 weeks, 2 cystoscopy with blue dye TRBTP retrograde and now I had a hi grade papillary urothelial carcinoma, in situ invasive into lamina propria, and muscular is propria present and uninvolved. I want the bladder reserved. I also had a stroke last December, which left me with disabilities on my right side. I'm going to Mayo clinic for a second opinion. I'm having bladder spasms, and pain during urination presently. Looks for opinions.

New to the group. I have my first consultation Monday. Hope to get started soon. I heard it’s a long journey proud of you all for sharing. Prayers to all of you. Thank you for your encouragement and a sounding board.

Has anyone ever heard of a
pretzel treatment (INLEXZO / TAR-200? My surgeon spoke about this after my second surgery as an option if BCG treatments fail sometimes I get so depressed other times I’m hopeful. I did some research and someone told me that 50% of BCG treatments don’t work. I went to Sloan Kettering. They told me even if they get all the cancer they’re 70% chance it’s gonna return. I guess I just have to exercise my Faith. I still can’t understand why treatment treatments that can work are so expensive or are not covered by your insurance. Sorry to be Dougie downer.

@divey it is easy to get depressed dealing with cancer. Bladder cancer especially likes to return. My husband was a BCG failure and was then offered Keytruda which also didn't prevent recurrence. This has been in the past 6 years, and since then there are new drugs and combinations to try. My husband elected a radical cystectomy with neobladder after 3 years of attempted control and is content with his decision. It looked like the best way to get a cure with his highly aggressive muscle invasive cancer.
As for the insurance fiasco, that is total frustration. You can request for your doctor to do an appeal when a treatment is declined. It is sad that our medical professionals must waste their time dealing with insurance decisions made my non-medical uneducated personnel. Keep treading water as there are new treatments being approved and more research being done. Look for the things that make you happy and have gratitude for them every day. It helps to keep the attitude positive. Though it feels like your life is on hold as you battle cancer, you really must concentrate on keeping something positive in your life, no matter how small.
I hope someone who has experience with this treatment will comment here.

I had a bladder cancer tumor removed, a cystoscopy, TURBT twice and I’m starting my first BCG treatment today at MAYO in Phoenix. My next surgery is the end of July for a radical robotic nephrectomy to remove my right kidney with cancer .

I’d like to know what services are available through the hospital so I think that’s how I’ll use my time today while I’m holding and turning. I want to know about possible counseling and maybe massage or self-care.

Greetings all. First I want to thank everyone for sharing their journey here, and for their suggestions. I have finished my second TURBT, and am scheduled for my first (of six) BCG treatments in two weeks. My concern at this point is the side effects of this treatment. My research tells me that they vary wildly, and usually get more severe in later treatments. One poster here mentioned taking Buscopan for cramps and contractions and then Panadol Osteo for pain after. Is anyone else familiar with these drugs? Thanks!

@bettychamb I suspect you can receive palliative care through Mayo if you request it.

@sepdvm thank you so much for the encouraging words. I usually stay pretty positive but sometimes I feel like I’m in a dark room. So I’m going to try to remain positive thank you so much.