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coachL

Hi.  After 6 courses of BCG and another biops, we just received pathology indicating my husband has TCC at least into the muscle layer of his bladder.  The doctor is recommending removal of the bladder.  Anyone else out there have any other options?  I've heard so many rough stories of bags and neo bladders not working so well.  I would appreciate any help or names of awesome doctors.  We are willing to travel.  

 

Thanks!

 

 

red750

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Hi coachL,

In Feb 2014, I was diagnosed with TCC in the bladder and had my bladder, prostate and lymph nodes removed in March. Pathology found cells in my lymph nodes, and I undertook a course of chemo ending in July. I have now been in remission for 15 months. I have the urostomy pouch. I was surprised at the number of people I have met who have similar. My experience is that provided it is emptied regularly, at least every two hours, and not allowed to become too full, and is changed every 48 hours, there is little difficulty with it. I go about my normal activities as before. I do not know how old your husband is, so I don't know what his activity levels are. I am in my 70's so I'm not into physical sports, etc. but I have no problems with driving, mowing the lawn, social activities etc. Other limitations are more due to my age than anything to do with the cancer treatment. I know this doesn't directly answer your question, but just passing on my experience.

Wishing you and your husband all the best,

Peter.

coachL

red750 said:

Need Help

Hi coachL,

In Feb 2014, I was diagnosed with TCC in the bladder and had my bladder, prostate and lymph nodes removed in March. Pathology found cells in my lymph nodes, and I undertook a course of chemo ending in July. I have now been in remission for 15 months. I have the urostomy pouch. I was surprised at the number of people I have met who have similar. My experience is that provided it is emptied regularly, at least every two hours, and not allowed to become too full, and is changed every 48 hours, there is little difficulty with it. I go about my normal activities as before. I do not know how old your husband is, so I don't know what his activity levels are. I am in my 70's so I'm not into physical sports, etc. but I have no problems with driving, mowing the lawn, social activities etc. Other limitations are more due to my age than anything to do with the cancer treatment. I know this doesn't directly answer your question, but just passing on my experience.

Wishing you and your husband all the best,

Peter.

Hi Peter.  Thanks!  Your

Hi Peter.  Thanks!  Your information was very helpful.  So it looks like you had surgery first then chemo.   We have heard some have chemo before surgery.  I am somewhat reluctant to have my husband go through chemo first as i know he has a hard time with it.  6 years ago he had a differnt cancer that required chemo and it was rough!  We are headed to Mayo in Rochester as soon as we can get an appointment to discuss his case.  

 

Thanks for your quick reply!

 

 

red750

coachL said:

Hi Peter.  Thanks!  Your

Hi Peter.  Thanks!  Your information was very helpful.  So it looks like you had surgery first then chemo.   We have heard some have chemo before surgery.  I am somewhat reluctant to have my husband go through chemo first as i know he has a hard time with it.  6 years ago he had a differnt cancer that required chemo and it was rough!  We are headed to Mayo in Rochester as soon as we can get an appointment to discuss his case.  

 

Thanks for your quick reply!

 

 

Need Help

Hi coackL,

I had the alternatives explained to me, and the reason the urologist thought surgery was the best alternative for me. It was after surgery when they discovered that cells had escaped the bladder and were found in the lymph nodes that chemo was recommended, to kill any undetected cells that may have been floating around in my system. The chemo treatments I had were cysplaten and gemicitabine and consisted of 6 cycles of 3 weeks - 1 week 6 hours, 1 week 1 hour, 1 week rest. My earlier posts can be read here:

http://csn.cancer.org/node/294242

Peter.

 

Lazy_Bones

Muscle Layer - those are the

Muscle Layer - those are the key words. Once it escapes the outside of the muscle layer, it can (and will) spread to other parts of the body. The muscle layer is the outside layer of the bladder. If cancer cells escape the bladder, first the cancer goes to the nearby lymph nodes, and then onward. Usually the "muscle layer" diagnosis means that the only safe measure is removal of the bladder, to get the tumor out of the body, hopefully before it has had a chance to spread. Leaving the bladder in is not an option. Check with any NCI-designalted hospital for medical guidance, if yo are unsure.

dude101

red750 said:

Need Help

Hi coachL,

In Feb 2014, I was diagnosed with TCC in the bladder and had my bladder, prostate and lymph nodes removed in March. Pathology found cells in my lymph nodes, and I undertook a course of chemo ending in July. I have now been in remission for 15 months. I have the urostomy pouch. I was surprised at the number of people I have met who have similar. My experience is that provided it is emptied regularly, at least every two hours, and not allowed to become too full, and is changed every 48 hours, there is little difficulty with it. I go about my normal activities as before. I do not know how old your husband is, so I don't know what his activity levels are. I am in my 70's so I'm not into physical sports, etc. but I have no problems with driving, mowing the lawn, social activities etc. Other limitations are more due to my age than anything to do with the cancer treatment. I know this doesn't directly answer your question, but just passing on my experience.

Wishing you and your husband all the best,

Peter.

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