Balihigh,

Appreciate your input. May be back at you with questions later!

Peggy

Thanks, Pat.

Trying to absorb all the information is overwhelming at times, but I surely appreciate all the info I can find on this.

Peggy

Peg,
I was diagnosed with aggressive (grade 3) in the beginning. When I first found blood in my urine in Jan. 2008, I was scoped and the doctor found 4 tumors. I had a TURB followed by 12 BCG + interferon treatments. In May another tumor was found followed by another TURB and I was scheduled for another 12 treatments. However, the path report came back as suspicious for invasion. I opted for a second opinion.

I began the second round of treatments and received 3 more. However, my new Dr. at Sloan Kettering recommended a radical cystectomy. I had this operation in Sept. and of course stopped the treatments. I was very lucky in that I had few complications with the surgery and recovered very quickly. I was pretty much back to normal after 6 weeks but I received an illeal conduit or bag which has less adjustment than the neo or Indiana pouch diversions. These two diversions are more natural though. It is a personal decision.

I will be happy to answer any of your questions.
Balihigh

Hmmmmmmmm....well i'm kind of surprised why O'Donnell picked Mitomycin as first line since he's been doing trials with BCG and Interferon for some time
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6TD3-4G6XT8D-N&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=85c98a0104e2b8748edd5739fed743a3
He may not have mentioned follow-up as yet as he wants to see what you do with the initial course of BCG/Interferon???
There are many reasons why say a T1 would be recommended for early cystectomy....multiple tumors is one of them and/or progression to a higher grade.
He has a reputation as a great doctor in this field. You are probably in good hands as there are not many out in that area of the country.
If you would want a second opinion and your insurance allows I'd make that trip to MD Anderson, Memorial Sloan in NYC..top Cancer Hospitals or The Cleveland Clinic or Johns Hopkins in Baltimore..the top Urological centers who also specialize in bladder cancer. If you need names i've got those too.
I personally had 6 opinions....sort of overkill huh? Dr. Herr at MSK did my second TURB and i would have stuck with him but he did not want to do the Indiana Pouch which i wanted. I was already invasive at that point. So i did my research on women and bladder cancer and specialists who can do the Indiana and went to see them...Schoenberg at Hopkins, Stein at USC/Norris, Bierhle at Indiana U (where they invented the pouch), Mass General just to hear them out on bladder sparing, and Dr. Inderbir Gill at The Cleveland Clinic. I chose Gill but wouldn't have gone wrong with any of them...and none of them disputed the pathology of Memorial Sloan.
Sorry for the long post.......Pat

Not sure exactly how to respond on these forums. Guess I will just respond to everyone in this one message.

Jack: What you've quoted me regarding all the treatments, cystos and maintenance treatments is exactly what I was afraid of. My doctor ONLY mentioned 6 treatments.

I have a call in to the person who would be doing the treatments; will check with her about a copy of the path report.

So getting the 2nd opinion didn't confuse you? Sometimes it does work that way, you know . . . they totally disagree.

Thanks for the info and phone # -- think of anything more, send it on!

Balihigh: Did your cancer come back as the aggressive type after they did surgery and gave you the BCG + Interferon? That was one of the things I could see happening to me . . . go through loads of treatments, and then it becomes aggressive! You brought up another question, though. Which type of surgery did you have? How painful, how long to recuperate, what don't they tell you?

Appreciate your input.

Pat: Guess what! The doctor you recommended is my doctor. Thought that might happen. He came highly recommended by 2 doctors in Dallas (our niece works for them).

You must have a wealth of knowledge to share with us regarding bladder cancer. Would imagine your background in pharmacology assists you a lot in understanding, or does it frighten you? Show business, huh, you will have to share with all of us someday.

Peg

Peggy...actually one of the best in the country is at the U of Iowa ..Dr. O'Donnell......
http://www.uihealthcare.com/depts/med/urology/urologymds/odonnell.html

He'd be tops for a second opinion.

And actually i don't work for anyone at the moment. I mainly do research and work as an advocate for Bladder Cancer. My degree and background is in Pharmacology with an avocation of show business....i know...strange mix...long story!!
Pat