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nythriver
@nythriver

Posts: 1
Joined: Feb 24, 2017

Bladder and prostate cancer, and neobladder reconstruction

Posted by @nythriver, Feb 24, 2017

Hello, friends.
There is light at the end of the tunnel.
It has been 8 weeks since my bladder and prostate removal, and I feel great (100 percent).
At 4 weeks out back to work at 6 weeks out back at the gym and snow shoeing.
I opted for the neo-bladder and it was absolutely the right choice for me.
No ostomy, or internal pouch, just a 4 inch scar below my belly button.
No pain or pain killers, just discomfort and inconvenience (IVs, catheter, relearning continence).
To pee I just release like before, flex my abs and out comes a nice urine flow.
I have great daytime urinary control (wear pad in underwear to be sure) am working on night time control (wear larger pad).
Bottom line, cancer is gone and I’m living the new normal.
Life is good!

REPLY

Welcome to Connect, @nythriver.
Thanks for sharing your good news. I’m tagging @predictable @marcia_pez @boomba @rwcccone so that they can also read your story.

NYthriver, you mention neobladder reconstruction. For anyone interested in reading more about this procedure, here’s some information http://mayocl.in/2l90jah

Did you also have cancer in your prostate?

@colleenyoung

Welcome to Connect, @nythriver.
Thanks for sharing your good news. I’m tagging @predictable @marcia_pez @boomba @rwcccone so that they can also read your story.

NYthriver, you mention neobladder reconstruction. For anyone interested in reading more about this procedure, here’s some information http://mayocl.in/2l90jah

Did you also have cancer in your prostate?

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@colleenyoung, thanks for calling me into this fascinating story from @nythriver. It is so encouraging to know about creative ways for cancer survivors to resume living as they had hoped. My bladder cancers — a dozen small ones — were epithelial when they were discovered hidden behind prostate tissue that had grown into my bladder. Fortunately, I had a TURP procedure to remove the excess prostate tissue while the hidden cancers were still young and barely threatening. In over seven years since then, no more tumors have appeared on what are now annual cystoscopies — thanks to BCG therapy (which uses a biological agent to clear potentially malignant cells from the bladder lining) for six weeks after the surgery. Like @nythriver, I’m living an essentially normal life and wake up every morning to plan another part of the next 20 years of my life.

@colleenyoung

Welcome to Connect, @nythriver.
Thanks for sharing your good news. I’m tagging @predictable @marcia_pez @boomba @rwcccone so that they can also read your story.

NYthriver, you mention neobladder reconstruction. For anyone interested in reading more about this procedure, here’s some information http://mayocl.in/2l90jah

Did you also have cancer in your prostate?

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Your post gave my husband some much-needed hope. He will have another scope on March 9, which will determine if he gets to keep his bladder or not. The closer we get to The Day, the more anxious he becomes, and reading your post made him smile. Thank you!

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.

thank you, John, for your encouraging words. We will find out tomorrow if it’s chemo again as a preventive or if the bladder comes out. My husband is 67 years old, with a long medical history of challenges. When he was 43, he had his right lung removed d/t cancer (Stage IIIB) which I was told would give him about another 6 mos to a year. In 2005, his gall bladder disintegrated from infection and he spent 5 weeks in the hospital recovering from that. In 2015, he developed heart failure and we found out that his ejection fraction (measures how much blood is pumped out by his heart) is only 10-15% (normal is 75%). On the heels of that diagnosis came kidney problems and then bladder cancer. He’s a survivor for sure, but the fear is in removing the bladder that his heart won’t stand the surgery. Also, the urologist said that many people die within 3 weeks of the surgery because it is such a shock to the body. The urologist said he would not do a neo bladder for my husband at his age. Do you remember how long your surgery took? How was the recovery, as far as weakness or issues other than getting your new bladder under control?

@marcia_pez

thank you, John, for your encouraging words. We will find out tomorrow if it’s chemo again as a preventive or if the bladder comes out. My husband is 67 years old, with a long medical history of challenges. When he was 43, he had his right lung removed d/t cancer (Stage IIIB) which I was told would give him about another 6 mos to a year. In 2005, his gall bladder disintegrated from infection and he spent 5 weeks in the hospital recovering from that. In 2015, he developed heart failure and we found out that his ejection fraction (measures how much blood is pumped out by his heart) is only 10-15% (normal is 75%). On the heels of that diagnosis came kidney problems and then bladder cancer. He’s a survivor for sure, but the fear is in removing the bladder that his heart won’t stand the surgery. Also, the urologist said that many people die within 3 weeks of the surgery because it is such a shock to the body. The urologist said he would not do a neo bladder for my husband at his age. Do you remember how long your surgery took? How was the recovery, as far as weakness or issues other than getting your new bladder under control?

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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.

@marcia_pez

thank you, John, for your encouraging words. We will find out tomorrow if it’s chemo again as a preventive or if the bladder comes out. My husband is 67 years old, with a long medical history of challenges. When he was 43, he had his right lung removed d/t cancer (Stage IIIB) which I was told would give him about another 6 mos to a year. In 2005, his gall bladder disintegrated from infection and he spent 5 weeks in the hospital recovering from that. In 2015, he developed heart failure and we found out that his ejection fraction (measures how much blood is pumped out by his heart) is only 10-15% (normal is 75%). On the heels of that diagnosis came kidney problems and then bladder cancer. He’s a survivor for sure, but the fear is in removing the bladder that his heart won’t stand the surgery. Also, the urologist said that many people die within 3 weeks of the surgery because it is such a shock to the body. The urologist said he would not do a neo bladder for my husband at his age. Do you remember how long your surgery took? How was the recovery, as far as weakness or issues other than getting your new bladder under control?

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Yes, we do live in a largely rural area in Central Illinois but seeking treatment in Chicago for a second opinion is definitely doable. I’m so glad you are a strong proponent of the neo bladder option. Well, we’ll know what path we’ll have to take soon enough. Another adventure…

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