Radical Cystectomy: Would like to hear the experiences of others

Padcev es una inmunoterapia?. Trodelvy es similar?. Entiendo q son muy costosos. Dios quiera q encuentres un tratamiento eficaz. Ten Fe.

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@ggarrepy, sorry to hear that BCG treatment didn't work for you. I moved your post about heading for radical cystectomy and ileal conduit soon to this existing discussion:
- Radical Cystectomy: Would like to hear the experiences of others https://connect.mayoclinic.org/discussion/radical-cystectomy/
I did this so you can connect with others like @jessi684422 @sue225 @katydid77 @spooz2

Sue shares more in this discussion:
– My husband's radical cystectomy experience https://connect.mayoclinic.org/discussion/my-husbands-radical-cystectomy-experience/

You may also be interested in following the Ostomy support group discussions here: https://connect.mayoclinic.org/group/ostomy/

What questions would you like to ask as you prepare for surgery?

Thank you so much. I am also having a PET scan next week because my abdominal CT showed a nodule in my pelvis. If the PET comes back positive, I believe they will do some chemo first before surgery.

Hi everyone,

I just found this forum, I can see posts were mostly in 2021, but I just thought I would offer my experience with a Radical Cystectomy and Ileal Conduit which had slight complications and ended up a nine hour operation, the complication was from a previous surgery in the early 80's which was a major bowel blockage due to salted peanuts, and they had to remove 11 inches of upper bowel, but all the adhesions in the bowel from all those years ago caused issues with my Cystectomy.
My Cystectomy was done on the 5th of December 2021, the main reason for this surgery was because I previously had a Suprapubic catheter, that small op was done in September 2016, Due to my bladder stopping working completely, prior to that, I had Urethal catheters for a number of years, due to my bladder being very hit and miss for working properly, lost all the feeling of wanting to pass urine, so my bladder would constantly overfill regularly and was in hospital numerous times for water retention in the bladder, on the worst case of that, which was way beyond agony, when they emptied my bladder, they got 2,100 ml of urine out, my suprapubic catheter started to hurt after about 6 months from being fitted, it gradually went so bad for virtually 24 hours a day, I ended up on 100mg of Morphine tablets every day to curb the pain, and even that struggled to work on some bad days, which was usually 3 or 4 days a week, so the final option was the radical cystectomy.
So I now have a stoma for urine, the Operation was partly done by robot, the rest by the surgeons hands, overall it went well, the complications with adhesions simply extended the op time to 9 hours, it was a rough recovery though and I was in hospital for 13 days, they came to show me how to change my pouches, which are Oakmed convex pouches, and I like those, so still use them now, they stick well, I have had a small number of leakages, where it's started to come away from my belly, and woke up a few times soaking wet, but that still happens, just not very often now, and now it only takes less than 5 minutes to change them.
It was simply done for quality of life, as I had none whilst I had the suprapubic catheters in, and now I feel it's the best choice I have ever made to have the Cystectomy, as I am totally pain free now, so from that view, the op was a total success,.
The biggest compromise with choosing the op was, that he explained firstly that if I had the op, which included removing the prostate as well as my bladder, there would be a very high % chance that I would never be able to have an erection again, my wife was with me at that consultation and was massively very supportive, and even under those circumstances, and due to witnessing the amount of pain I had been in for just around 5 years, she agreed that the operation was definitely the way to go, and said that I couldn't keep going on with the amount of pain I was in every day, so, I agreed and opted for the Cystectomy, now today, I I'm glad it was done, I have other health issues, but this operation helped the most and at least gave me some quality of life back.
Anyone who is looking at the option of a cystectomy to hopefully cure some major issue, have it done, yes, it can be a long recovery from it, for some, it can be upto 6 months and for some even upto 12 months, myself, it took about 8 months, but it was all worth it in the end.

I just realised how long my post is, I didn't realise I had rambled for that long, so I hope no one minds the length of my post.

Just one more thing, I wish anyone who is looking at this operation all the best, and hope all goes well with your recoveries.

I've added two or thre pics also.

Thanks and regards to everyone.

@friskle, your experiences are helpful and very welcome. Might I suggest that you follow the both of these support groups:
- Cancer: Managing Symptoms Support Groups https://connect.mayoclinic.org/group/cancer-managing-symptoms/
- Ostomy Support Group https://connect.mayoclinic.org/group/ostomy/

By click "Follow", you will receive a notification when new posts are made to the support groups. I'm confident that your experiences and tips would be appreciate by new members learning to manage a stoma.

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.

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!

Actually special forces experience didn't helped much except for those hard years in the jungle
My next cat scan is in April. Finished up the cancer blocker procedures third week of February. Please keep in touch. Thank you

I look forward to hearing good results from your April CT scan. Keep a positive attitude and enjoy each day that you feel a little bit better. There is a book I really liked reading about living with cancer by a Mayo physician. Do you like to read?

Thank you, I still work full time even though I'm 78. I don't have to work but I like my work. Therefore usually reading legal briefs and the like and of course many medical appointments. Many other issues medically then the bladder cancer. Wounded 4 times in Vietnam and each time not bad enough to keep me out so they taped me up and sent me back out. Had a top secret clearance, crypto. My body looks like a bad put together puzzle. It would make me tired typing all my medical issues so I won't.