Recurrence of Bladder Cancer

piersonge

I had a TUR in February of 2000 followed by six weeks of BCG. I had another TUR in August, 2000 and it has been recommended that I have my bladder removed. I want to know everything! The pros and cons. I have been informed that there is a possibility that I may be a candidate for a bladder reconstruction. I need to know everything. The pros and cons. I need help.

Thank you.

katheter

I had my cystectomy in October of 1998. I'd be happy to answer any questions you may have.

Unknown

I had my bladder removed 3yrs.ago,I have an Indiana pouch,I am doing great!

AuthorUnknown

I had a bladder reconstruction in 1999, but the cancer came back right a way. My doctor at the time did not try the BCG. I findly went to the Mayo Clinic 2000. The doctors there said it was too late to try BCG. They recommended taking my bladder. I have adapted very well to my ostomy. Being able to sleep through the night is wonderful. I have traveled through Europe, Eastern Europe, and Africa with my ostomy. I waited too long to take the bladder out though, and this January my transitional cell cancer was found in my left lung. That was removered at the Mayo Clinic and they recommended a round of chemo. I finisted the chemo last month. I wish I had had my bladder remover before it was. It may have stopped the cancer. They give me a 30% chance of beating this, and I plan on beating it. I am a 49 year old female, and I plan on going back to work this fall.

reelady

katheter said:

I had my cystectomy in October of 1998. I'd be happy to answer any questions you may have.

Hi- First time doing this. I read your post, my husband is going for radical cystectomy in 4 weeks. We are very anxious, and hoping that we made the right decision would like to move forward and put this behind us. He had papallary trasitional cell, with some muscle invasion, and moderate lymphoid. He is 48 in good health and Doc feels he is good candidate for neo-bladder. Cat scan and bone scan negative, any info. regarding the surgery, recovery and recurrance would help us a great deal.

ro

reelady said:

Hi- First time doing this. I read your post, my husband is going for radical cystectomy in 4 weeks. We are very anxious, and hoping that we made the right decision would like to move forward and put this behind us. He had papallary trasitional cell, with some muscle invasion, and moderate lymphoid. He is 48 in good health and Doc feels he is good candidate for neo-bladder. Cat scan and bone scan negative, any info. regarding the surgery, recovery and recurrance would help us a great deal.

Hi, This is also my first time on this board. I don't have a lot of info for you. What I can tell you is a am a female, 53, found out I had invasive bladder cancer 2/3/03, had entire bladder removed 3/5/03. They found microscopic traces, as the docotor put it, in 2 out of 12 lymph nodes. The surgery went well, I chose to have the outside ileal conduit which so far has presented no problems. I will start chemo next week for 4 months. I am anxious about that, but hopefully it will not be bad. Since this is all new to me also, I would just tell you not to worry about having bladder removed, recovery from surgery about 5-6 weeks. I will inform you about chemo once I start if you would like.

reelady

Dear Ro- Thanks for your reply, good to hear of your successful surgery, and quick recovery- Hubby is concerned about the surgery, I am concerned about after surgery and recurrance. Most likely, will have to have chemo too, Dr. says too soon to tell now, but we are prepared if we need to. I would like to hear from you about the chemo, It will be helpful. My husband is having his surgery at University of Pennsylvania, have to wait a month from now- Waiting is tough.

reelady

ro said:

Hi, This is also my first time on this board. I don't have a lot of info for you. What I can tell you is a am a female, 53, found out I had invasive bladder cancer 2/3/03, had entire bladder removed 3/5/03. They found microscopic traces, as the docotor put it, in 2 out of 12 lymph nodes. The surgery went well, I chose to have the outside ileal conduit which so far has presented no problems. I will start chemo next week for 4 months. I am anxious about that, but hopefully it will not be bad. Since this is all new to me also, I would just tell you not to worry about having bladder removed, recovery from surgery about 5-6 weeks. I will inform you about chemo once I start if you would like.

Ro- I think I did this wrong sorry. I posted below thanks for your reply, and happy to hear you had success in your surgery and recovery- Yes please let us know how you progress with your chemo, we may have to have it too, Surgery at University of Pennsylvania, May 14, and the waiting is tough

ro

reelady said:

Ro- I think I did this wrong sorry. I posted below thanks for your reply, and happy to hear you had success in your surgery and recovery- Yes please let us know how you progress with your chemo, we may have to have it too, Surgery at University of Pennsylvania, May 14, and the waiting is tough

just a little note to let you know I got your reply. I will be glad to let you know how the chemo goes (hopefully I'll be energetic enough to get on the computer). I also had my surgery at a University Hospital, Loyola University Medical Center in a Chicago suburb. I felt good about that, because I think University hospitals keep abreast of information and research and latest techniques. In my process of talking to a few people before I had surgery, regarding the different types, I talked to a man and young girl who had the Indiana pouch. They were both very happy and led pretty active lives. I also talked to a lady who had the ileal conduit and was happy with it. I chose the ileal conduit, because I thought that was the least complicated. I would suggest that your husband or you contact the United Ostomy Association. They should be able to connect you with people in your area who have gone though similar operations. I don't have the phone number handy right now, but if you want it let me know. I did not talk to anyone who had a neobladder, because I just never considered it, but the ET nurse did explain all 3 procedures to me.

daddyslildoll

My dad just went for his check-up after having a radical cystectomy in February 2003. There are absolutly no signs of cancer. The doc. doesn't want to see him for 6 months. Hurray!!!!! The doc. said that he beat the statisics!!!! And he looks great. Finally, he is starting to gain weight. 8lbs.!!!! I hope and pray everyone else is as fortunate as my dad. Anyone who wants to talk can e-mail me at devilorangel56@yahoo.com

chemkat

What stage was your originial diagnosis? I had a stage 1 extensive but not invasive, superficial tumor but it was the size of a baseball. Due to complications during cystoscopic surgery it was necessary to open my abdomen and stop my internal bleeding caused by the scraping of my bladder. After BCG and Inteferon treatments I went to Emory for a followup and when my doctor did a cystoscope he was convinced that it was back with a vengence and said I had to have biopsies right away but to be prepared for a possible cystectomy. He took 12 deep tissue biopsies and every one of them was negative. I had developed what they termed nephrogenic adenoma. He said it was from my terribly invasive surgery and the effects of the chemo. After about 6 months it cleared up but my doctor said he was so surprised by the lab reports. Of course I'm still under close supervision but so far so good.

chemkat

ro said:

Hi, This is also my first time on this board. I don't have a lot of info for you. What I can tell you is a am a female, 53, found out I had invasive bladder cancer 2/3/03, had entire bladder removed 3/5/03. They found microscopic traces, as the docotor put it, in 2 out of 12 lymph nodes. The surgery went well, I chose to have the outside ileal conduit which so far has presented no problems. I will start chemo next week for 4 months. I am anxious about that, but hopefully it will not be bad. Since this is all new to me also, I would just tell you not to worry about having bladder removed, recovery from surgery about 5-6 weeks. I will inform you about chemo once I start if you would like.

Ro,
Will you please let me know how you are doing? I thought I was out of the woods after being clear for 18 months but doesn't seem to be the case. Just found a pimple size tumor. Waiting on pathology due back after Xmas. I could use some good news if you have any. thanks