Bladder Cancer Group: Introduce yourself and connect with others

@ronniek check out this link to a recent discussion of this topic. https://connect.mayoclinic.org/discussion/neobladder-or-ileal-conduit-unsure/

My husband had cystectomy/prostatectomy/neobladder surgery at Mayo Clinic 5 years ago. We spent 2 years dealing with complications from the surgery. Others have had much better experiences. He is still satisfied that he made the right choice. He must self catheterize due to scar tissue but that became routine pretty quickly. Continence is good with minimal leakage only at night. He just did not want to deal with a stoma.

On Friday my husband who is a young 80, had the TURBT procedure after a CT scan showed a tumor. The cystoscopy after this showed one large tumor and several other smaller ones that were high grade. He had been having microscopic blood in his urine for quite a while but the first cystoscopy a year ago didn't show anything. I feel that it was missed so that in itself is extremely frustrating. It was only taken seriously when he bled into the toilet. We immediately switched doctors. One of the tumors seen on Friday was CIS so the new urologist said that there is a very high chance of recurrence. My husband has a follow up at the end of the week so hopefully the pathology report will be back by then so we know where we are heading. So far, unless there is a major change, he recommended six BCG treatments that will start after healing and then another TURBT procedure. Then there will be very close monitoring. He is surviving the catheter which he can remove tomorrow and luckily had no spasms with it this time which he had after a Urolift two years ago. I know this is going to be a change of life situation and more so because of the high grade diagnosis. Thank you for reading this!!!

@neisie13 good luck on TURBT recovery. It takes a while. Also, good luck on the BCG treatments!

My 75 yr old hubby has been dealing with kidney then bladder cancer since fall of 2023. He's done several trials with no lasting effect and had the offending kidney removed. Too late though because a tumor had already developed in his bladder. After a TURBT, he has been on a mytomycin, Zusduri, once a week for 6. He just had his third one, and has an irritating rash all over. If there is something rare, he'll get it! The other two had no reactions other that feeling tired for a few days. He is also on Keytruda infusion every 21 days. He's done well with that. We just keep on keeping on....

@neisie13 You are right, cancer certainly is life changing, but hopefully can be managed to control if not cure the cancer. My husband had a highly aggressive muscle invasive bladder cancer that was also missed by local doctors. At Mayo Clinic ha has had multiple Turbts and chemo and was a BCG failure once on maintenance. He had minimal issues with the BCG treatment tho. He ended up after two years of recurrences choosing radical cystectomy and neobladder formation. He has been cancer free, must self catheterize 3-4 times daily, and is happy with his choice. It was a massive surgery though, with multiple complications during the healing process. It sounds like your new urologist is on top of the diagnosis and treatment so you were wise to switch. Referrals and second opinions are valuable. Good luck in this journey.

Thank you so much for reaching out. It sounds as if your husband has had quite an ordeal. Can I ask how old he is? I'm just afraid that with my husband being 80 years old, he would not be able to withstand such intense treatments, surgery and possible complications. We went to the first post op appointment yesterday and the pathology on the specimen has not even been done yet. The doctor called the lab and they didn't even pick up the specimen until Tuesday, so now we go back in two weeks for the results. We are in limbo because he mentioned that if there is muscle involvement the best treatment is cystectomy. I was hoping that they would at least try radiation and chemo first. I am just hoping that the tumors did not infiltrate the muscle but mentally I am preparing for the worst. We won't do the surgery until we get a second opinion at Johns Hopkins. You were lucky to have the Mayo Clinic. Right now he still has frequency and burning from the procedure but at least the catheter is out. Thanks again for your note!