Hoping To Find Someone To Talk To

hello my dad was told he had bladder cancer in jan of 04. he had to get checked every 3 months and every other time it would come back. then we really got lucky and it stayed away he has beeen clean when they would check him  but the  bladder washing keeps comming back that there is something there. the dr told my dad to get perpared to get his bladder taken out and it has really been hard.  He keeps saying if i knew i could have a normal life i would be ok. If he could talk to someone who has had this done i think he would be ok with it. I really need help cause i dont want my dad to give up. if anyone could help i would be very greatful my email address is daddysgirlmunk@yahoo.com thanks for any help

 

On 6/28/2007 Sandy07 wrote:

hello my dad was told he had bladder cancer in jan of 04. he had to get checked every 3 months and every other time it would come back. then we really got lucky and it stayed away he has beeen clean when they would check him  but the  bladder washing keeps comming back that there is something there. the dr told my dad to get perpared to get his bladder taken out and it has really been hard.  He keeps saying if i knew i could have a normal life i would be ok. If he could talk to someone who has had this done i think he would be ok with it. I really need help cause i dont want my dad to give up. if anyone could help i would be very greatful my email address is daddysgirlmunk@yahoo.com thanks for any help

Hi,

My husband was diagnosed with bladder cancer in August of 2005 when he was just 28 years old.  He had his bladder removed and now has a neobladder; a bladder that was created out of part of his small intestines.  How old is your Dad?  Neo-bladder surgery can be a difficult surgery and not all hospitals do that type of operation.  We had to travel out of town for the surgery.  It is very possible to have a normal quality of life with a neo-bladder.  My husband uses the bathroom just that he always has, it just takes him a little longer to empty his bladder now. 

Not everyone is a candidate for a neo-bladder.  It depends on the health of the patient and the type of cancer they have and how aggressive it is.  If your Dad is not a candidate for a neo-bladder, it is likely he would receive an external pouch.

How old is your Dad?  How is his health, other than the cancer?  I know this can be a very scary road to travel, but it is important to do whatever is necessary to remove the cancer from the body.  My husband is now 30 years old & cancer free. 

If you have any specific questions, please ask.  I will be happy to try and help.  I found this board to be a great source of information and support during my husbands chemo & recovery.  I will be happy to help you if it is possible.  Best of luck to you & your Dad.

Stephanie 

 

 

 

He could have chemoradiation to the bladder only to try to clear it and it may give him a chance to keep his bladder.  We use it for invasive TCCa so it is worth a shot if he wants to give it a try.  It is not strictly standard of care but if he is motivated and will continue followup it is worth a try. If it is still positive then a cystectomy with ileal conduit is not that bad and as above there may be other options.

 

On 6/28/2007 Sandy07 wrote:

hello my dad was told he had bladder cancer in jan of 04. he had to get checked every 3 months and every other time it would come back. then we really got lucky and it stayed away he has beeen clean when they would check him  but the  bladder washing keeps comming back that there is something there. the dr told my dad to get perpared to get his bladder taken out and it has really been hard.  He keeps saying if i knew i could have a normal life i would be ok. If he could talk to someone who has had this done i think he would be ok with it. I really need help cause i dont want my dad to give up. if anyone could help i would be very greatful my email address is daddysgirlmunk@yahoo.com thanks for any help

Sandy

I know what your Dad is feeling I too has faced with losing my bladder and wondering how life would be without it. I am only 35 , when it came time for the operation the doctors found some cancer in other parts other then the bladder and they decided it would be best to leave the bladder and fight this with chemo. In my case I have a rare cancer that started in my belly button and the cancer grew through the bladder. They don't have a chemo drug that is very effective with this type of rare cancer. If I had a choice of having my bladder removed or fighting it with chemo I would choose the operation. It may sound awful but surgery is often the best cure. I found a very helpful web site for people like your dad and I think it could help you both alot.It is blcwebcafe.org      it is a bladder cancer web site with all kinds of people going through the same thing . I hope you can find some help with dealing with this terrible lost of having a normal life, but I know with out a dout I would jump at the chance to have the operation if I could.

Good luck

 

On 6/28/2007 Sandy07 wrote:

hello my dad was told he had bladder cancer in jan of 04. he had to get checked every 3 months and every other time it would come back. then we really got lucky and it stayed away he has beeen clean when they would check him  but the  bladder washing keeps comming back that there is something there. the dr told my dad to get perpared to get his bladder taken out and it has really been hard.  He keeps saying if i knew i could have a normal life i would be ok. If he could talk to someone who has had this done i think he would be ok with it. I really need help cause i dont want my dad to give up. if anyone could help i would be very greatful my email address is daddysgirlmunk@yahoo.com thanks for any help

I had surgery that removed my bladder on April 29 2004. I can tell you that i live a perfect life. Quality of life is the same as before. I also struggled with the decission. The period of recuperation is not easy. You are weak, it affects your mind, a one point I even visited a psychiatrist to help me. I was licky, I did not need a bag and qualified for a neobladder so I urinate as if I had a bladder. My continence is about 100% during the day and about 90/95% at night. It has been three years. I check myself once a year and thank G_D all is clean and well. My surgery was performed by dr's Skinner and Stein at USC in California. To me they are the best in the world. Great people, Doctors and team. If you need any information, post it and I will reply. I would provide you with my email address but I think they do not allow it in the forum.

Take care, have faith and it will all turn out fine.

Luis