About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Pages

Member not yet following any Pages.

Posts (2)

Mar 7, 2017 · Bladder and prostate cancer, and neobladder reconstruction in Prostate Cancer

Well Marcia, your husband is indeed a survivor.  Regarding the urologist who is working with you, I have not heard of a high risk of dying within three weeks of the bladder surgery.  The Mayo Clinic staff went over the risks very carefully with me and I would have paid attention to the higher risk of death for three weeks after surgery if it had been mentioned.  I also don't understand the "too old" comment.  I'm 73 and got my neobladder in my 60's – my surgeon is now Chair of Urology at the Arizona Mayo Clinic and he was not bothered by my age.In fact, I'm offended by the "too old" comment.  Not every urologist is capable of creating a neobladder and I wonder how capable your urologist is in creating one.  Dr. Robert Ferrigni used a stapler to form the colon and bowel tissue into a bladder.  The entire operation took about 4 hours, though my doctor is called Dr. Ferrari by the nurses due to his speed in the operating room.  The operation takes about 6 hours in some locations.  How much quicker is making a pouch for the urine?  More importantly, the pouch leaves a conduit into your body, a potential source of infection and constant problems.  The neobladder removes these problems as the original plumbing is used for urination.  Talk with a couple of patients with pouches and you'll see the value of the neobladder as a means to reduce infections.It took a couple of months to train my neobladder, though day time training is pretty quick.  Nights will depend somewhat on the size of the neobladder and how much one drinks before sleeping.  My  neobladder was cut down in size when I had a reoccurrence of the cancer in my left kidney and ureter so I use some large bedpads and Depend adult incontinence panties at night.  Still, my quality of life is excellent despite some accommodations for the leaking.  Not having to worry about a stoma is a major advantage to the neobladder and well worth pursuing, if possible.  My original neobladder held a full liter, according to the surgeon.  I'm down to about 10 ounces now and that's stretching it!  Are you folks located in an area with somewhat limited medical resources?  Your urologist's patronizing comments suggest he/she has limited competition locally.  It would be interesting to write the Hospital requesting their age cut off policies for various operations.  If the Hospital Administrater does not realize they have an age cut off for neobladder construction in cancer patients he or she should be so informed.  Sounds a lot like age discrimination.

Mar 6, 2017 · Bladder and prostate cancer, and neobladder reconstruction in Prostate Cancer

Hello Marcia. I’ve had bladder cancer since 1993. For starters, your husband faces some choices but not a death sentence. I am assuming that he is being treated by a physician who has extensive experience with bladder cancer. If not I would consider getting a second opinion from a urologist with that experience. In my case saving my bladder would have been a bad idea, but the urologist treating me did not realize it. I got a second opinion from a specialist at the Arizona Mayo Clinic. After a short look through the scope the Mayo urologist said “that sucker’s got to come out.” He removed the badder and made me a neo-bladder out of colon and bowel tissue.

Life with a neobladder is pretty normal once the bladder has had a couple of months of training. Nights can be more of an issue, depending on the size of the neobladder. However, my activities are not affected by the neobladder and I still lead an active outdoor life. I’ve had a reoccurrence of the cancer and have lost my left kidney and some of the neobladder, but outside of chemotherapy and more bed pads life is still great. I got bladder cancer when I was 49. I’m 73 now and have made it into old age – a major goal of mine! Your husband’s life will change some but the quality of his life should remain very high.