RC SURGERY IN JULY 2022: Hoping for a Full Recovery

KIDNEY STONES SAVE MY LIFE

I am a 71-year-old male and very active and typically in great shape. 6 Years ago, I woke up with severe pain in my back. I went to ER and was diagnosed with kidney stones. During the removal process, the Urologist discovered very early-stage bladder cancer.

The cancer was removed and I went thru the full BCG treatment process. Each year since then, they ran a scope up me and I was clear until April of this year. They saw a large tumor that was determined to be muscle invasive. I was told I had to have my bladder removed as well as my prostate and two lymph nodes.

Learning about my options

My entire world changed and it was very difficult emotionally. I quickly obtained 3 opinions from Karmonas in Detroit, U of M, and Mayo Clinic. The standard procedure recommended was to go thru 3 months of chemo before surgery to ensure that no stray cancer cells escape. The Mayo clinic informed me that they would recommend either way....do the chemo or go straight to surgery based on the current condition of the tests that were done.

Because the side effects of the chemo would worsen already existing conditions I had such as tinnitus and neuropathy, I made the very difficult decision to go straight to surgery and do it quickly. My thought was, when they pull the organs they will test and determine if all the cancer was removed. If not, I can always do chemo after even though it is not the most recommended route. I found that having options is a very difficult issue. I needed to make decisions rather than being told there was only one route.

Making a difficult decision

My next very very difficult decision was to get a bag or a neobladder. I struggled over this for weeks. The Dr. gave me a list of patients that I was allowed to call who had both types done and it was extremely helpful and emotional talking to them. They were so generous to do so and I am forever thankful. I ended up getting the neobladder. I am still working and have a very active lifestyle, golfing, hunting, yard work, etc. and I felt the bag had too many negatives.

God answered my prayers, the organs were removed with very good margins, and chemo was determined not to be needed. Thank you Mayo Clinic. The recovery after the surge ry was a tough road. One week in U of M hospital and I won't go into all the details but it was not easy.

Upon finally getting home I spent the next 3 weeks with a catheter. After that was removed, I spent 3 weeks getting up every 2 hours to urinate and measure amounts. There was never any to measure because it continually leaked out. I was wearing diapers and making a mess. I was emotionally and physically exhausted from lack of sleep. Not to mention the constant pain in your abdomen from the extreme surgery.

One night at 2 am about 4 weeks into it, I got up and actually had urine in me to pee out. The neobladder had held some urine. It was the first time and I was so happy I cried. From then on, it continued to hold more urine although it still leaked.

How it's going

Fast forward, it has been 5 months since surgery. I am able to do everything I did previously. I am golfing and hunting and going to the office. However, I need to wear a pad. It has greatly improved, but during the day certain physical motions will cause a squirt and leak. During the last few months of constantly dealing with incontinence caused me some hard times. I have broken down crying hard thinking that the rest of my life I will be dealing with this. Should I have gotten the bag?

I'm told that it can take 6 months to a year to stop the incontinence. I have a very good Physical Therapist that specialized in Pelvic Floor and Kegel exercises. I have improved. I am dry most of the time during the day but always have changes of pads in my briefcase because accidents can happen at any time.

At night

At night....that is another story. I'm sorry this is so long but hopefully, it may help someone if they are trying to decide.
At night, I must wear a full diaper and a pad on the bed because it will get wet. I would wake up about every two hours because I could feel the wetness. I would get up and change and I was getting exhausted from no sleep and becoming emotionally depressed.

Eventually, I have been able to get 3 to 5 hours in between changes, which helps a lot. I believe my story is an exception because all of the men I spoke to that had Neo bladders eventually went totally dry during the day and maybe got up once per night. Maybe because I'm 71?

Feeling grateful for a second chance

I pray every day and have a good therapist. I am happy most of the time, but sometimes it gets me down. I will keep praying and exercising my pelvic and hope one day I will recover fully. I still feel I made the right decision. The way I look at it, I was going to have to deal with a change of life and the hassles, either way, it went...bag or neo. I know somewhat what life with a bag is from having the catheter for 3 weeks. The bag and tube kept me awake as well and they can leak too.

My wife is quick to point out that I'm not the only one that has had to wear a pad and feel the dampness. God love her.
I just need to realize how lucky I am that I am cancer free and got a second chance when many do not. I pray and hope the best for all of you that need to go thru this.

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