Bladder Cancer Group: Introduce yourself and connect with others

Hi Quirina staying positive is so hard to do even when our loved ones are supporting us. you have heard the phase, only those who have warn my shoes totally understand. But it is nice to have family and friends support. I wish you great success with your treatment and a fast recovery 🙂

Hi Dave I personally have not had the BCG therapy so can not help you with that but i would bet you will still be able to get them clubs out, good luck Dave

Hi everybody! I am 66, born and raised in The Netherlands and living in the USA for 22 years now. December 11th 2024, I saw blood in my urine, alarm bells went off, and the next day I was at my doctor's. Doctor first thought it was maybe a UTI but after some urine tests it was not. Within 10 days I had an appointment with a urologist, a week later a Cat Scan. Back to urologist nothing to be seen on Cat Scan but urologist, just to be sure, checked my bladder with camera and found a small tumor. Of course, I was in total shock since I hoped it was a kidney stone that caused the bleeding. 10 Days later I had a TURBT in combination with a 1-time chemo. Urologist told me that during the operation it was difficult to find the tumor but found it, took it out and saw my bladder looks fine and healthy, except for the small tumor on the edge of my bladder. Still, I hoped that would be it but out of prevention I will start BCG treatment coming Tuesday, March 11th. She is positive but I am absolutely not looking forward to it and to be honest I am scared to death. I try to stay positive but wow that is difficult even if my family is telling me I will be fine. My thoughts are with you all too and will follow your journey.

hello everyone, first time on this chat site. First of all I want to wish you all Gods blessings and a positive outcome. Heres my story, 2 years ago I was diagnosed with noninvasive papillary high grade urothelial carcinoma bladder cancer. (no muscle involvement). Dr removed a tumor, and said come back in six months to do a cystoscopy,I did and no tumor was found. Dr said come back in 6 more months and do another cystoscopy, I did at that time Dr removed a small tumor at that time. Dr said do another cystoscopy in 6 months I did and no tumor found. Now up to date, I did a cystoscopy last week and a small tumor was found and will have it removed at the hospital next week. I'am questioning this 2 year routine I have had. Iam being treated at a small hospital and am wondering what you all think if Mayo Clinic might have a better treatment plan for my situation. .Any comment appreciated,and as I said earlier my prayers are with all of you during these tough times.

My journey with bladder cancer began last January. BCG # 1 is March 31 and ends May 5. Wondering about what to expect with BCG therapy discomfort/complications. I have substantial incontinence and live in a condo and am concerned about how best to deal with pads and diapers. Also wondering if I'll be up for golf once the Minnesota weather moderates.

Thank you for sharing. I hope your husband is doing well.

Rick

Hello @rickfromaz, My husband had that surgery at Mayo MN in December of 2022. He is glad that he did it, despite many complications and surgeries. He does need to self catheterize 4 times a day but can also urinate on his own some. Here is a link to details that I shared about his surgery and complications:
https://connect.mayoclinic.org/discussion/bladder-cancer-and-neobladder-surgery/
Others have had a smoother journey with this surgery, but we have decided that if there is the smallest chance of a problem, he will experience it. Should be playing the lottery......
He remains free of cancer as he just had CT urogram last week and he is down to just doing that yearly.

I have been battling with aggressive high grade Bladder Cancer since October of 2021. I have had a total of 12 surgeries to remove tumors, the latest of which was 2/24/25. The previous surgery was in September of 2024 to remove 4 tumors. I have undergone multiple treatments including a trial drug at Mayo. The staff, nurses and my Doctor, Mark Tyson, have been wonderful and helping me battle this cancer. After this last surgery, Dr. Tyson has recommended that I proceed with removing my bladder due to the high frequency of the tumors return and quantity and size. I'm scheduled to get a neobladder operation on 3/31/25. I would love any feedback from those who have undergone this procedure and your experience with this surgery and how life has been after.

Thanks Rick

Thank you, Sue. Your reply is encouraging and I hope and pray the cancer cells are eradicated.

So sorry to hear you have bladder cancer @babz0518. My husband was diagnosed with a highly aggressive UCC in 2019. He also had a reaction to the post operative chemo infusion into his bladder. He was on BCG for the full cycle and into maintenance when he had another tumor so different treatments followed. His initial BCG infusions gave him more side effects and those lessened as he went along. Everyone is different in the way their immune system reacts to BCG though. Listen to your body and rest. Your immune system is responding to the BCG and actively working to control any new tumors in your bladder. Good luck with this treatment.