I was diagnosed with invasive blc in December 06 at age 59. Since I was a 35 year Hodgkin’s Survivor I had a long time relationship with a medical oncologist. He recommended a surgeon that did neobladders rather frequently. To answer your first question, for me it was worth it. I had continence almost from day one. I was in the hospital for 10 days recovering from the surgery. I had no surgical pain. The surgery lasted 12 hours and I was unconscious another 12. Waking up in recovery with the breathing tube, 24 hours after walking into the operating room, was the worst part of it. A week later I had the Foley catheter removed and the surgeon couldn’t believe that I got up off the exam table and walked into the bathroom and peed without any leakage. For about a month if I lifted something or coughed hard I had a little leakage but I quickly got used to wearing a pad and when I played golf I wore a Depend, just for peace of mind. There were a few leaks overnight in the first two months but again a Depend worked fine. (I also kept a pad from the hospital on top of the sheet to save extra laundry but I rarely needed it.) I stopped wearing the Depends when the chemo ended (about six months after surgery.)
I choose the neobladder over other options for “quality of life” e.g. easier to travel with fewer supplies, could still take a leak in the woods on the golf course
, etc. and for fear of infections. (Not that had I had any real experience with how any of the other options might affect my daily routine. So I guess it was a little subjective.) Learning to self-cath was actually very easy once I got over the thought of it. I still cath once a day to insure the bladder is emptying and more so to irrigate it with saline. I did have 2 infections in the first six months that each put me in the hospital. Greater care with the cathing and staying vigilant to germs (e.g., I’m never with a bottle of Purell.) have prevented any more infections. I still feel it was worth it.
I was the fifth neobladder surgery my surgeon did the month I had mine done. As with any surgery its best to find someone that does the procedure often, no matter what it is. The surgeon prepared me to wake up from the surgery with a stoma or other appliance in case I didn’t have a good piece of intestine that could be used to make my neobladder. (He had me sit and stand in various positions to mark the spot he’d use if he couldn’t do the neobladder.) Also I had the surgery before chemo, since with my history they felt I might not tolerate the chemo as well as others. (The radiation I received from my Hodgkin’s comprised my bone marrow making recuperation from chemo a tougher challenge.)
I started a cycle of Cisplatin/Gemcidibine six weeks after the surgery. No way to sugar coat it, the Cisplatin was brutal. Nine months after chemo and having no evidence of any cancer my scans showed some new nodes and since April 08 I’ve been on Taxotere every three weeks, a more tolerable treatment. In the beginning I embraced the notion that surviving this would be a physically and mentally debilitating fight but one well worth taking on. So, mental preparation is very important and information is power.
I was in a position to retire when I got the diagnosis so “normal” activities became far more leisurely than the 60 – 70 hour weeks I worked before. But within a month of the surgery I was driving, going out to dinner and the movies and shopping. Once the weather warmed up I was back on the golf course. I do get up at night, usually once, but have gone as much 8 hours overnight without leaking. There is no question cancer changes your life’s equation; but when push comes to shove I was pleased to learn how resilient and adaptable I was. I would make the same choice today, without hesitation. For me, the key factors were absolute trust in the surgeon and those who recommended him to me, open discussion about the choices with my wife, and assurance that except for the cancer I was reasonably fit and in good health.
Prayers for a good outcome and the strength to live with it.
Dan Peters
