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Do I Feel Lucky??

8 years 11 months ago #34320 by BoilermakerJim
So many thanks to you all. So much information to digest but thank you for pointing me in that direction. The more I understand, the more confident I feel that my doctors and I will beat this thing one way or another.

Reading and studying has helped my memory and what I now remember is that my cancer before was transitional cell and this time around it is carcinoma in situ. I remember Dr. Birhle stressing that this time it was CIS. After reading I now know why.

As Pat said it is kind of a roll of the dice. But I have no doubt that they will keep a close watch on what is happening.

Btw, I just completed my 2nd dose of BCG (not fun, I had forgotten how unpleasant the side-effects were) and expect to hear some follow-up today or Monday from Dr. Birhle. Will let you know how that goes. Thanks again for all of your help.

Oh and Alan, absolutely Boiler Up! I think if we get out of the NU game without someone else going down for the season it will be a win. I had such high hopes for football this year. Not giving up yet but it hasn't been pretty. On the other hand, basketball season should be sweet!

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8 years 11 months ago - 8 years 11 months ago #34315 by Alan
Boiler Jim,

I am copying the updated link on BCG that Mike bookmarked awhile back. Gives you more info about BCG. http://www.uroweb.org/?id=218&gid=1

FWIW department. I choose BCG because it wasn't muscle invasive and to give a chance to retain my bladder. As Cynthia mentioned there are risks either way. I found this site a few years ago just as I started my first BCG and avidly followed as I acquired info to make good decisions. For now, any recurrence or progression I will see MD Anderson in Houston as it's only 2 1/2 hours from where I live (close to San Antonio). Hopefully they will never see me.

Keep reading other threads or the other material available on this web site. You are welcome to talk directly with me if need be but, I consider Mike and Pat supreme experts!

Boiler up against NU this weekend and celebrate life! You have found an adversary and will beat 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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8 years 11 months ago #34298 by Patricia
Sorry my fault..i said T1 should have said Ta......but a lot of studies demonstrates the high progression potential of stage Ta grade 3 tumors, since nearly 50% recurred and 25% progressed to invasive disease. These results may be closely compared with the results of previous trials of stage T1 grade 3 disease.
And there is new stuff out there also which says a complete resection and clean margins which only the best can get as you know (Memorial Sloan found a 75% error in patholgical staging...thats pretty astronomical..this from patients coming in for second opinions)..and follow up with BCG may reduce it back to a lower grade.
Its kind of a dice throw isn't it? As long as you have a top notch surgeon watching this you'll know if its going to work or not in pretty short order.
There are so many markers out there now and tests for mutations that can predict but which institutions use them? I don't know...my guess is the top ones.
I know my questions at this point would probably drive them up the wall.
Pat

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8 years 11 months ago #34289 by mmc
Jim,

Your note said Ta G3. Is that still correct? I saw some posts about T1 and that would be a different decision in my opinion.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 11 months ago #34286 by GKLINE
Jim
As you can tell by now, we are a fractious bunch. There are many ways to attack this. None of them are wrong. And none of them are perfect. They all involve risks. Judge the risk for yourself.

We are pleased to have you here. As you can see, the answers you get will be honest and caring. Our only goal here is to get you well. I wish I had found this site before my neo surgery. I was so unsure of the direction we were headed that I just questioned everything.

It was just the expertise of my Dr.s that led me to the right decision. Finding this site was just a way of confirming my Dumb Luck. These people were able to show me Why these decisions were made and why I am still here. My Dr.s followed Mike's Chart!

Keep us in the loop!

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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8 years 11 months ago #34278 by Patricia
Hi Jim,
Well first of all Indiana U is tops in Urology and bladder reconstruction......Dr. Koch can whip out a neobladder in 3 l/2 hrs..and Dr. Birhle extremely experienced. I actually intervied Dr. Birhle when i was making a decision on who i wanted to do my surgery and i needed what i call female friendly...Dr.Birhle is a master at the Indiana Pouch so he was my choice. At any rate this is where you want to have surgery done if thats the route you decide to take.
There are many markers which can indicate which cancers are more agressive ..MMP 9 is a newer marker studied in Denmark.
Several articles have been written on T1G3 and are under Articles of Interest.
Pat

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