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3 weeks post TURBT

5 years 1 month ago #48726 by Alan
Lisa,

I was in your husbands situation 7 years ago but, BCG stopped my BC. First, here is hoping he won't need a cystectomy. I live in New Braunfels, TX so I am about 2.5 hours from MD Anderson. I have listened to podcasts from their staff and know a number of people that have had to use their services besides my own checking of them. Should the need arise they are IT!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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5 years 1 month ago #48714 by GKLINE
Lisa
Sorry to have you need this site..... But I"m glad you found us here.
I have ALWAYS been THE advocate of finding a Dr that has done a TON of RC !!!
In surgery I want a Guy (or Gal) that is more akin to an assembly line worker than an artist! The assembly line worker has seen every scenerio and hiccup that can occur along the way and knows how to handle it.
At the time of my surgery I was all set to go to MD Anderson(from NY) to get my RC done. But the surgeon I had, was at MD Anderson for 8 years and had done hundreds of RC before me..... So I stayed and have been happy.

But I am sure you know all of this.
I just wanted to give you a moral boost as the caregiver, and wish you both the best of luck.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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5 years 1 month ago #48707 by Lisalegalnurse
Thank you Sara Anne, yes it is very different being on this side of health. Yes, our urologist has Bob scheduled for the Instillation of the immunotherapy 4 weeks after the next TUR, but has also suggested consideration of cystectomy. Bob wants to wait to make the final decision until after these next two procedures, and I fully support that, but we want to have our plan ready should we need it. I already feel so blessed to have found this site and really appreciate your help in getting us information to help us. Bless you so much!!!

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5 years 1 month ago - 5 years 1 month ago #48706 by sara.anne
Lisa, I moved your post so that it has its own "thread" and perhaps more people will see it and reply.

So sorry to hear about your husband....but he is lucky to have someone with your experience close by. But it IS different when it is your family, isn't it? If the cancer is still non-invasive, has the urologist suggested BCG before resorting to cystectomy? I had non-invasive high grade, went through BCG and BCG maintenance and am now 7 years cancer-free and still have my bladder.

MD Anderson is the best there is, and you are absolutely correct in finding a place that has expertise in this area. Cystectomy is NOT a routine surgery and you want someone/someplace where they do LOTS of them. They may also have some ideas for avoiding cystectomy.

I am sure you will hear from others who have been there.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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5 years 1 month ago #48705 by Lisalegalnurse
My husband was diagnosed this week with high grade non invasive BC. We live in oklahoma and I am a nurse but want to go to a cancer center that does cystectomy in great numbers. I am told we have a surgeon here who is capable, but want to explore options. Has anyone been to MD Anderson for cystectomy and if so, can you recommend? We are having the second TUR in 3 weeks and hope none of the muscle has become invaded as the first pathology is clear, but due to the aggressiveness of the grade are already being given this option. It sounds like most on the blog have done well and I thank The Lord for the posting of your good outcomes! Thank you in advance

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