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Living with a Neobladder, please share your story.

2 years 1 month ago #54242 by ericeaton719
I'm 29 years old and I have been diagnosed with bladder cancer I have gone through chemo and now waiting on the surgery but I haven't decided if I want to go with the neobladder or the bag. Can someone help me with some facts bout them both please and thank you
The following user(s) said Thank You: lotech35

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2 years 4 months ago #53778 by baci2bear
You want a surgeon that has done this operation many times. This is a real specialty. I was fortunate in that my insurance, Ventura County Health Care, has some kind of association with UCLA. The Clark Urology center at UCLA is ranked #3 in the country for urology related operations. On the day before Thanksgiving in 2016 I had a piece of tumor removed from my bladder because I was peeing blood. It turned out to be an aggressive stage 3 tumor that had penetrated the muscle wall of the bladder. The Urologist who did the operation recommended that I have a radical cystectomy performed laparoscopically. Ventura County Medical Center does not do this operation, and they referred me to UCLA.
I had six weeks of pre-operative chemo, which I weathered quite well. My operation was on March 31st. They removed my bladder, prostate and surrounding lymph nodes. and made a neo-bladder with a piece of intestine. The following pathology report indicated they got all of the cancer. I was in the hospital at UCLA for a week and I was very impressed with the level of care. I only experienced minor pain, which is amazing, considering what they had done. I was home for about a week, when I felt very week. Home health care came to my house immediately, measured my blood pressure at 60/30, and sent me to the local hospital. I had acute renal failure - my kidneys stopped working. They put a drain in my abdomen and drained about 2 quarts of fluid - I am not kidding.
I went back home after about a week. I was very feeble for a couple of weeks, and that was a life changing experience. Old people who do not stay fit become feeble like this. They usually fall and suffer greatly from it. I swore I would stay fit from now on.
During my recovery, I lost 45 pounds. I had zero appetite and food hurt going down my trachea. I think it was because I was intubated for over eight hours during the neobladder surgery.
It is now four months since my surgery. I am 6'2", and went from 230 pounds to 180 pounds. My blood sugar dropped to where I am no longer diabetic. My blood pressure, with only Atenolol, a mild blood pressure medication, stays close to 120/80. I no longer have Sleep Apnea. My appetite is back 100%, but I eat to stay in the 180 pound range. As far as my commitment to stay fit, I have a workout on DVD that I use every day. I take a Pilates class twice a week. An I take my doggies to an off-leash park every day and walk four laps around the perimeter. I am in much better shape than before the operation. I am in physical therapy for incontinence. During the day, as long as I void every two hours or so, I stay fairly dry. Night is a different story. I tried getting up every two hours but this made me a zombie during the day. So now I get up every four hours. I often wake up with Depends soaked with five pound of urine, but I put absorbent pads with waterproof backings on my bed. I simply throw them out. The incontinence is a pain in the butt but it is not serious. I am grateful they removed all the Cancer.
My advice to anyone who is going to undergo this surgery is get in as good a shape as possible before the operation. No matter how far you have to travel, go to a surgeon that has done this surgery laparoscopically many times. And be patient with yourself during recovery. It takes quite a while, but you do get back to where you can do normal everyday activities again.

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2 years 4 months ago #53774 by uyoeli
Could you share your process for selecting a surgeon - how many did you talk with, how many did you actually go see, and what made you choose one over the others? I am three months into chemo, expecting RC in December. That gives me plenty of time to choose a surgeon and facility, but I don't want to overdo it.

If you are in Nevada and had the operation in LA, how exactly does that work? Do you have a local urologist, and how much was he/she involved before and after the surgery?

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2 years 5 months ago #53693 by Alan

Thanks for sharing! You'll never know how many people you just helped!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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2 years 5 months ago #53692 by nevadajeff
You have probably read over and over again while researching this on the internet that finding a surgeon/facility that specializes in neobladder surgery is very important. I can't agree more. Also, I feel that finding a doctor who completely understands that the goal of the surgery is not only 100% Cancer removal but also giving you the quality of life you want post surgery is just as important. Have you had this discussion with your doctor? I was told that the majority of the surgeons will as a matter of course remove the prostate, surrounding lymph nodes and major amounts of surrounding tissues to just be sure they got all of the cancer not caring about how it will effect you afterwards. Again, their only goal is 100% cancer removal. They were not used to dealng with a single athletic guy like me who was not willing to live with whatever results came out of this just to be there for their family long term and to continue their couch potato life style.
Starting with my initial visit we were focused on the two goals. Even though from the cystoscopy the doctor could tell that the tumor was muscle invasive and the very aggressive type they still tried to saved my bladder with the TURBT. Even though they did not succeed after these procedures because of the specifics of my tumor (size, depth in the muscle, age) it allowed the surgeon to learn exactly what he was dealing with. During my RC he had a pathologist standing by while he constantly took samples of the surrounding areas for the pathologist to immediately analyze. This way he only removed what was absolutely necessary. When I woke in the ICU he told me "I have been doing this a long time and even though the pathologist is not completely done I am (almost) sure I got it all". A couple of days later the pathologist confirmed what he said and that no cancer was found in any of the extensive margin samples or scans. This is the type of surgeon you want. He explained to me that the only reason the part of prostate was removed was because the tumor was right next to it. I think the reason my results have been so good and the quick recovery is because the majority of the surrounding areas were spared.
Yesterday, one month out of surgery I went to the gym and took it real easy. I did 10 minutes of each of the stair master, elliptical trainer and treadmill. I wore my regular underwear and did not leak.
I can't emphasize enough that before the surgery make sure you are in the best physical shape of your life. It will make the recovery that much easier. Good luck! Getting walking around the hospital floor within 1-2 days after the surgery even though the catheter will be hurting you really helps. The morphine based pain meds are great for the pain but suppress your breathing and make you constipated (very bad for your traumatized intestine where they took the piece out of) so use as little as possible.
I just received the first invoice that only included the 7 day hospital stay and fee for use of the facilities for the surgery. It does not include the surgeon, anesthesiologist, pathologist etc. Total $193K. Ouch! Fortunately my insurance will cover most of this. I would double check what your insurance covers and does not. The final cost of the TURBT and related was an additional $30K.
The following user(s) said Thank You: Alan, pomona

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2 years 5 months ago #53691 by MoreLife
NV Jeff, thanks for sharing that. I'm almost your age and approaching RC with neobladder, operation scheduled for late this month. Your outcome is encouraging overall.

You note that your operation spared part of the prostate. I'm wrestling with that same decision. Can you say more about how your physicians characterized the risks of that approach and why you decided to take them?

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