Bladder removal

I had a TURBT performed about 1 1/2 weeks ago after the urologist discovered a tumor in my bladder. It was determined after they examined the specimen that the cancer had penetrated into the muscle layer. The urologist recommended that I have the cystectomy to remove the cancer. I will see the surgeon for a consult next week. I have also talked to the chemo specialist and he said that an alternative to the surgery would be to have chemo and radiation therapy. He was not advocating either, just giving me another option. I just joined this site today to hear about other people's experiences and to be more informed before I make my decision. Thank you for sharing your story. It gives me more insight on the post-op recovery.

Hey Tubguy, I am only going to speak to my experiences with bladder removal. I had a rare T1 bladder cancer variant diagnosis 2017. I received 3 very qualified opinions on how I should proceed , all of them recommending RC. I had (2) turps in the space of 6 weeks to confirm that it was not muscle invasive and verify the nature of the variant (sarcomatoid) , with the RC 3 weeks later. You are probably saying wow so fast? As soon as they recognized the variant, they fast tracked the whole process.( here in Canada , they call it “the gold list”). I was 65 yrs at the time, still working and very fit so they recommended a neobladder. I was horrified at the prospect of impotence and the less than cheery stories of incontinence. But based on all clear path results following the second turp ,they said the RC was my best chance for long term survival, so my wife , (who was very supportive) and I went for it. I was in the hospital for a week and discharged with all the appropriate temporary tubing. You will be jacked up on pain meds while in the hospital and by the time you get home, it’s soon more discomfort than pain.I’ll spare you the details of the rehab, but it’s pretty safe to say it will be as good as you make it. I was back to work ( building contractor ) four weeks after the op with a leg bag for the Foley catheter which stayed in for six weeks post op , then I was good to go full bore. It blows my mind that they pull all this stuff out , fashion a new bladder that really works out of a section of bowel and 6 weeks latter you’ve got a new lease on life. I’m pretty sure I’ve been one of the fortunate ones, no complications, never had to self cath , 100% continent both day and night, the scar has almost totally disappeared and I only have to get up once a night to pee. The urge to do so is unlike the old one but with time the sensation to go wakes you up and all is good. There isn’t anything that I can say to you that can make the fear disappear for you, it will linger for a very long time. I’m 2 1/2 years down the line now and I have to say that there isn’t a day that goes by that I don’t remind myself of how many months it’s been since my diagnosis because with each successive month I know that my chances are better and better. I have made it my mission to learn as much as I possibly can about this cancer, and my position specifically, and found that knowledge is highly soothing. It’s the fear of the unknown that drives you goofy. I’ll keep an eye out for your posts and if I can help you out with any more personal insights, it would be my pleasure. You will NOT be a freak. Orillia.

Thanks Mary, I was looking for someone like you to share with. I am nervous about the surgery and hope I am not ( forgive me for saying) some kind of freak after it’s done. The difference is they will be building a neo bladder instead of a pouch.

Dear Tubguy,

My name is Mary and I haven't been on this site for quite some time, and yet when I saw your story I feel that I should share my story with you and maybe give you an idea of what my bladder cancer journey has been.

I went through 10 mitomycin and about 16 BCG applications. After several TURBs, my urologist told me the bladder could not be saved. That was in 2015. I went for a second opinion at a highly regarded cancer center, Fox Chase Cancer Center in Philadelphia. I got the same bad news about losing the bladder. So, I made the decision to stay with Fox Chase, as they only do cancer!

Had two treatments of chemo in Dec. 2015 and had the cystectomy on March 1, 2016. The surgery was completed, they put me in ICU overnight for observation, and then a hospital room for the next four days. I had an excellent team - surgeon, oncologist, ostomy nurse and social worker - the entire time. Quite impressive.

Since the surgery, which I greatly resented (that's just me venting!!) I have been healthy. I have no more cancer, and since I have no more bladder, no getting up in the middle of the night to go to the bathroom. I attach the daytime pouch that collects my urine to the nighttime collection bag. So, the logistics are pretty straightforward.

Emotionally, it took me better than two years to come to terms with losing my bladder. Fox Chase sponsors a support group that meets once a month where patients new and old get together with our ostomy nurse and our social worker. We discuss all kinds of topics - problems, solutions, who just had a new grandchild and a general bonding of people who all have the same thing in common - the experiences of losing the bladder and how to come out on the other side and thrive.

After my surgery, while still in hospital, my ostomy nurse, Tina, came in and showed my husband and I how to change the bag that collects urine. It took some practice to get comfortable with the procedure, and with time I have become quite adept at the job, if I say so myself!!!

I can tell you that, although this whole process has taken 4 years now for me to finally accept what I have to do, I do accept it. I see my oncologist once a year now for blood work and scans to assure there is no more cancer cells lurking anywhere. I do believe the logo that Fox Chase uses in their advertisements, "Where you start matters". To trust your medical team is the first, and probably most important, step in getting through the whole bladder cancer journey.

I would be more than happy to keep talking to you sir! Just say hi and I will be there!

Mary

Thank you. I think you will be real busy recovering and I want no obligation placed on you whatsoever so I will follow this post here for your updates. I do wish you best and speedy recovery and yes I am very curious about process. Good luck brother. God's speed.