Bladder Cancer Survivor - Neobladder

All,

I have read several postings from folks who appear unsure how to deal with this dreadful disease. Please let me give you some words of assurance and hope.

I was diagnosed with Transitional Cell Carcinoma T2a grade3 on 12/15/2004. This was a 2-inch invasive tumor located on the bladder floor near the urethra. After resection, I was told that the bladder must come out and that I would only be a candidate for an "Ileal conduit" or "Florida Pouch". This was an out of body experience for my wife and me . . . so surreal that I could not eat, drink, or sleep for 48 hours.

After dwelling in the abyss of self-pity for two days, I pulled myself off the couch and began to take charge of my situation instead of the other way around. The first thing that I did was fall on my knees and ask God to wrap a shroud of protection and calmness around me. I put the entire situation in God's hands because I absolutely could not handle it.

I began to realize that there are TWO things that are important in this fight. . . Prayer and a solid support group. I got on the prayer lists of my church as well as several others and began to make contact with people who have had cancer. This action was the beginning to my survival and well-being.

Anyway, I was directed to Moffitt Cancer Center in Tampa, Florida for a consultation and second opinion. I was told that I must have the bladder removed and a neobladder would be built out of small or larger intestine with a "nerve sparing" prostate removal. This simply means that if there is no prevalent cancer in the pelvic lymph nodes, prostate or urethra they would leave the apex of the prostate for sexual function and improved continence.

On 01/31/05 I had the surgery and they created my neobladder out of colon. All went well and six weeks post-op I am doing well enough to return to work at the end of March. My pathology reports came back negative and long-term prognosis is excellent.

Please understand that YOU must take control of this thing or it will control you. Remember that a diagnosis of cancer is not an immediate death sentence and if you must have your bladder removed; it is not the end of the world.

I am a member of an excellent website that allows dialogue with patients who have either superficial or invasive bladder cancer and are in various stages of treatment. This site can be accessed at (BLADDER-CANCER-CAFE@LISTSERV.ACOR.ORG). You must become a member.

Good luck and God bless all of you.

Bob W.
neobladder 01/31/05

I am glad you posted. It is alwyas nice to talk to another person who is working with this and doing well.
We had our surgery in kc with Dr. Thrasher and we were very happy with the care.
Our review is next mon.
Our biggest problme is that they all want the money up front and we have spent our wad. Any help or encouragement onf surviving the bills.
Rose

What is happening in your life now. How do they look for any futher matastases and how often are you at the doctors. My dad is having this sugery in two weeks and im trying to assess what the recovery time is looking like. They want a robot to perform the surgery. Have you ever heard of this? What is your doctor telling you the life expectancey is? What grade cancer did you have and did they take the prostate also?

Deb

Would you be willing to support my father via email who had his bladder and prostate out eight weeks ago? If so how can he reach you cia email?

Deb

Debra,

I am generally monitoring another website of bladder cancer survivors and almost missed your request. I would be more than happy to assist your dad with any advice or encouragement I might be able to give. My Email is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html --- and office Bmail is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html --- My advice would be that he tags his correspondence with both of my Email addresses as I am not always on this one.

Good luck to you and keep the faith that all will be OK.

Bob W.
neobladder 01/31/05

To Bob W.,
I cannot access the website you listed at the botton of your message. Is it still active?

Dean,

Yes the site is still up and operational. the URL is http://www.blcwebcafe.org/.

Yo can read all of the material (tales from the trenches)and join. Joining will allow you to chat with all of the survivors.

Keep me posted on how you are.

Bob W.

Thank you for your reply, Bob.
I had my surgery for the Neobladder on March 21,'06
Am recuperating at home now. The surgery went well -- took 41/2 hours. They took the bladder and also the prostate as a precaution. The lymph nodes were clear. I have a quesion about how long it takes, or if you ever have control over the leaking during the day when sitting, or coughing, etc. I understand it is inevitable at night while sleeping. Would like to hear from someone who has been thru this.
Thanks for any light you can shed on this.
Dean