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T1-G3 BCG failure update

5 months 3 weeks ago - 5 months 3 weeks ago #57829 by Alan
Swarmy,

1st, thanks for your service. I have bookmarked some Arkansas hospitals however, you might screen Dallas, Memphis, St. Louis also as potential hospitals. See: https://health.usnews.com/best-hospitals/rankings/cancer/arkansas. I was surprised that Arkansas didn't register for a University setting... it might be there I just didn't go further.

You have had more than your fair share of setbacks. As Sara Anne indicated cystectomy is probably the real option left. You do want a hospital and surgeon that do many of these a year. That means at least 25-35 a year so it probably means something out of state. I am attaching a good read on the 3 types of diversions: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

Good luck and we do try and listen. Rants, questions even good news is always welcome.

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 months 3 weeks ago #57828 by sara.anne
WE are not doctors here, so our "advice" is worth what you pay for it!

IF the cancer keeps returning and BCG is not working or cannot be used, radical cystectomy is probably the only thing left. IF the cancer has not metastasized this would cure it. You need to discuss this option with your doctors due to all your other issues.

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 months 3 weeks ago #57827 by swarmy2007
Thank You for ur advice. At times I feel just overwhelmed with all this. In 8 years had 2 heart attacks (stents x4 now) thyroid cancer surgery, Barrett's RF Ablation x 3, Pneumoperitoneum with emergency Laparotomy, spinal surgery now this. As recover from 1 thing another says hello. Fear all the BCG & proposed Gemzar for 2 years will run me down so much surgery will be risky especially with the laparotomy residual issues. Do know that in the end surgery best bet for eradication. Haven't resources to use the name brand hospitals, will have use local in Arkansas but end of day we get what we can afford and access. Am 100% disabled Vietnam Vet and do have VA to turn to but prefer outside care for just wait time for VA likely not be accommodating. My doctors are good folks and must have trust in them but getting answers to questions in the 10 minute visits is difficult so turned this forum for information. Thank You

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5 months 3 weeks ago #57825 by sara.anne
Radical cystectomy is not trivial surgery, but with an EXPERIENCED urological surgeon it can be very successful and after recovery a full life is possible. As aggressive as your cancer seems to be, it would seem that this might be the best approach.

Many times chemotherapy is done prior to such surgery.

This would be a good time to seek a second opinion at a center that deals with a LOT of bladder cancer, such as Memorial Sloan Kettering, MD Anderson, USC, Stanford, Mass General,Johns Hopkins, or a major medical school.

Wishing you all the best

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 months 3 weeks ago #57823 by swarmy2007
Diagnosed 25 months ago did TURBT with 6 weeks BCG and has returned tumor every 6 months.... just finished 3rd Turbt and started BCG but doctors stopped BCG after 2nd week due to 103+ temps and severe side effects. Also seems it's coming back faster. Have spoke of Gemzar. My question is just how bad/risky is the radical cystectomy surgery? For 2 years been constantly sick and TURBTS and no success. No chemo gonna cure this aggressive cancer and seems they are playing whack-a-mole at my risk. Is risk that surgery that great or just money in the treatment not the cure thing going here. If chemo never gonna work then me thinks waking up cancer free someday would be better then the containment program they like so much? What am I missing here. 68 yr old male with sketchy health. Also developed cystitis due to BCG and getting no treatment that. Advice or comments appreciated for am confused and getting frustrated.

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