← Return to Radical Cystectomy: Would like to hear the experiences of others

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@willismohr

I have just turned 78, male, and on 1/3O/23 had a Radical Cystectomy . BCG's didn't help and chemo just about killed me and Oncology said the chemo was doing about 30% more damage and only about 2% good so they upped my operation and took me off chemo after my third chemo. I'm not going to say it was pleasant. Operation lasted 8.5 hours. My left kidney was also blocked so I had a hose in my back going to my left kidney. When they scraped the lesions to do a biopsy the kidney small hole sealed up so I needed two bags. 18 times in the hospital (Kaiser and VA) for infections after the operation but in October the cat scan and an MRI said no more cancer and my next scan is in April . I had home heath and home physical therapy as well. I have been on cancer blocker injection /procedure since February and just finished my 13th and last blocker. I'm a army green beret special forces vet and 100% permanent and total scheduler service connected disabled by VA. I have for a few months been feeling pretty good. Yes, a bag for life and my wife changes it every three days. Because of Vietnam wounds I have nerve damage in my right arm so I really can't change the bag myself. I use a floor bag every night and change it every Sunday. I also have leg bags if and when I want to use them. Not being able to urinate the normal way is a little hard on the mind at first. There is more but my wife and I will celebrate our 51st wedding anniversary the 10th of march. Would like to chat when I can with males who have had a radical cystectomy.

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Replies to "I have just turned 78, male, and on 1/3O/23 had a Radical Cystectomy . BCG's didn't..."

Welcome to Connect @willismohr. My husband had a radical cystectomy and neobladder formation due to recurring invasive bladder cancer in December 2021 at Mayo Rochester. Unfortunately I was not able to find much information from patients with similar surgeries on Connect at that time. We experienced a lot of complications after that surgery, so then I shared our information on Connect in the kidney and bladder group, hoping to help others come together with their experiences. My husband is unfortunately not on Connect. He could certainly share the fun of having a nephrostomy tube coming out of your back, as well as now having to self cath a few times a day. These type of surgeries and recovery are not for the faint of heart. Your special forces experience may have helped to prepare you for all of this. I hope the Connect community can join in but if I can answer any questions or pass them on to my husband, please let me know. And congrats on 51 years!