Bladder Cancer

Hi Donald,
When you call ask for Sonia she is Dr.Smiths nurse tell her that Tim Ray asked you to call and yes I do live near nashville.As far as my sex life they did nerve sparing and although it took a couple of months I am now back to normal.My surgery was 11/01/05 I walk 4.5 miles a day six days a week. Recovery times vary, with me it was about 10 weeks before I felt pretty normal.

Good luck and keep me posted

Tim

Hi Tim (Penguin_)

Many thanks for your reply of(today 2/20/06).

Good to hear that a person's sex life, does not
come to an end. My Urologist (in Rogers Arkansas) said my sex life would me "over", after the removal of my bladder.

I will call as I said.

I will keep you posted.

Respectfully, Donald Briggs (Donald P.)

Hi Donald,

Dr. Michael Koch, the chairman of Urology at the Indiana University Hospital, operated on my husband. His office is in the Indiana Cancer Pavilion in Indianapolis, IN. The phone # is 317-274-7338 and his secretary is Sarah Jo. My husband's name is Shawn N., if you want to say that someone referred you.

As I read, you have received some wonderful information from Tim (Penguin.) He was very informative to my husband & I as we began this process. The doctor that operated on Tim (Dr. Smith)and my husband's doctor (Dr. Koch) worked together in the past. My husband & I were going to travel to either Vandy or Indy (both pretty close to us here in Louisville, KY), we only went with Indy because we were able to get into Indy faster. Actually, we would have gone to Mars if we had to.

You wrote to Tim that you were concerned that they would take your prostate and uretha...My husband & I found in our experience, that a doctor that doesn't do neobladders would have a hard time making that call. The doctors here in Louisville told my husband that they would take everything but the kitchen sink, when in fact, that was not the case after speaking with Dr. Koch. In the end, they did take Shawn's prostate (it had cancer), but that is NOT the case for everyone, nor is it the end of sex as you know it. I would definately encourage you to get a second opinion. There are new discoveries being made in cancer research everyday and my husband & I were not going to rest until we found a doctor that could answer all of our questions and give my husband a normal quality of life post - op. Dr. Koch povided us with that. My husband is only 28 & was also concerned about a normal sex life post-op. Dr. Koch assured us that there is sex after bladder cancer and/or prostate removal. My husband had his surgery on Jan 6, this past Friday marked 6 weeks since the surgery and he is already back to work and feeling relatively normal. He was in good shape prior to the surgery, except for the cancer.

I hope you are able to get the answers you are looking for. I learned throughout the experience that knowledge is power. Research and ask questions. Don't be afraid to get a second opinion. Keep us updated and good luck.

Stephanie

Hi Stephanie

Thank you for your message of 2-20-06.

Yes, you and Tim have given me some very valuable information, and I appreciate it greatly. In your message you spoke of "Vandy", what exactly does that mean??

I am going to ask Tim this, and I will ask you, about your husband's experience with it.

I think that the streching of the muscle, surrounding the bladder, tell's the man that he needs to urinate. Question: With a neobladder, what "sensation", alerts the man that he should urinate?

Many thanks,
Donald (Donald P.)

Hi Donald,

"Vandy" is Vanderbilt University Hospital.

About your sensation question...Tim will be able to expain it better I am sure, but my husband has said it feels more like pressure. He has also stated he has pain in his back sometimes, in the kidney area. Please take into consideration that Shawn is in the early stages of the second phase of recovery, which is learning to use his new bladder. He has complete daytime control, but nights are a challenge. Dr. Koch said it could take up to a year for full night control. Shawn sets an alarm twice a night now to wake up & empty his bladder. Without the alarm, he would wake up wet. He is only a little over 6 weeks post-op, we expect it to improve in time.

Any additional questions or experiences you wish to pick my brain about, please do. I felt much better talking to doctors when I felt well informed.

Good luck. Stephanie

Hi Tim (Penquin)

Thanks for the past, valuable, information on the bladder cancer.
How long has it been since you received your Neobadder??
Since there is a muscle around the Bladder, that streches, when the bladder fills, and tell the man that it is time to urinate. With a Neobladder, how does a man "know when to urninate"??

Many thanks, Donald P.

Hi Donald,
I got my neobladder installed 11/01/05. The bladder IS A hollow muscle, that expands and contracts there is no muscle surrounding it.A neobladder does the same thing it expands when full and contracts when empty the difference is the neobladder not being a muscle can not empty itself in other word there is no muscle to contract to empty it so you have to learn to use other muscles to do that but these are muscles you already use most of the time when you go now. Think of it as when you have to go real bad now and you push the urine out fast you are contracting the lower abdominal muscle this is where the neobladder is attached so by doing this act you can empty the neobladder. Practice feeling the abdominal muscle do the work so when you get your neobladder it won't feel weird. As far as knowing when you have to go you feel pressure and sometimes a mild ache and tells you that you have to go. When it gets too full you will feel the discomfort that Stephanie spoke about because it is starting to back up into your kidneys and your kidneys only like fluid going out not in.
Did you call Sonia?
Tim

Hi Tim (penguin)

Thanks for your message of 2-22-06.

I am Now running off to a Dr. appointment (in Rogers, Arkansas), 70 miles round trip, so will get back to you later.

Many thanks, Donald P.

They do this sugery all over the country. My dad had his out three months ago by a sugeron at the Universtiy of CHicago. He removed it via the robot and reconstucted it himslef into the neo bladder. I wouldnt recommend the robot because while dad is ok he had many complications. The surgeon is very experienced and the old fashioned way he can do in his sleep.

hope this helps.

the Rc which removes the prostate is not bad. Dad didnt need his urethea removed but i can tell you two facts.

#1- Porstate cancer has similar tissue to the bladder and it is common for the cancer to travel there. you dont need the prostate just the nerves. if you get an experienced surgeon they are able to do so frequently. my dad eneded up having prostate cancer also so if he didnt have it out, he could have died from going undiagneosed with that.

#2-You chance of survival is much greater with your bladder removed. If you wait too long it wont be a viable option and the other options arent pretty.